Jules' Weblog

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January 13, 2004

Fish!

Yet again the staff forgot the golden rule and served fish at lunchtime today. Jules was none too pleased, but dinner came up trumphs. And the chocolate cakes I brought in yesterday filled a hole

I'll post pics on Friday as I'm trying to find my passport, which I pray to God I haven't lost
UPDATE: Pic there now!

The DVLA have caught up with Jules and we got a fine through the post for not taxing her car last year. Jules won't sign anything without reading it first

Posted by alan at 11:47 PM | Comments (0) | TrackBack

January 12, 2004

Quiet

Jules was quite quiet tonight, probably a sign of the return to a day's physio after a weekend of rest. Plus the move around the ward and getting used to the new environment has taken its toll.

We also popped over to the Hospice to have a look around and meet the staff. It's a leap above what the Lister is offering, with her own HUGE room, tv, and really relaxed atmosphere. Also they're happy for Spitfire to come and visit, and for me to stay over too.

Jules move's on Thursday morning, so if you're planning on visiting after Wednesday best watch this space, or give Janet or me a shout.

Posted by alan at 10:44 PM | Comments (0) | TrackBack

January 11, 2004

Hello God

Taken from the Brain Tumour egroup tonight, cheered me up, hope it cheers you too

Hello God

Hello God, I called tonight,
To talk a little while..
I need a friend who'll listen
To my anxiety and trial..
You see, I can't quite make it
Through a day just on my own...
I need your love to guide me,
So I'll never feel alone.
I want to ask you please to keep,
My family safe and sound.
Come and fill their lives with confidence
For whatever fate they're bound.
Give me faith, dear God, to face
Each hour throughout the day,
And not to worry over things
I can't change in any way.
I thank you God, for being home
And listening to my call,
For giving me such good advice
When I stumble and fall.
Your number, God, is the only one
That answers every time.
I never get a busy signal,
Never had to pay a dime.
So thank you, God, for listening
To my troubles and my sorrow.
Good night, God, I love You, too,
and I'll call again tomorrow!

www.caringbridge.org/nm/zach

Posted by alan at 11:36 PM | Comments (1) | TrackBack

Asleep In The Bath

Was how I found myself tonight. Must've needed it, because I feel as bright as a button now

Janet, Stuart and Lisa popped to the hospital to see Jules . She was quite tired, no surprise after yesterday, so they didn't stay too long. But she was happy, which is the important thing

Posted by alan at 9:31 PM | Comments (0) | TrackBack

December's Stats

Quickly doing the admin thing today, tidying up around here, cleaning away the cobwebs...

This was December's most viewed page:

Tired

Posted by alan at 1:03 PM | Comments (0) | TrackBack

January 10, 2004

Curry Night!

Jules has been going on about having a curry all week just about, in particular:

So, after helping her move (see earlier) I popped down the Taj Mahal and bought the lot

Jules, tucking into her curry, and giving it the "fingers" up

I got a cuddle out of it, and the definate thumbs up, although I was hoping to get a bit of curry myself

By 9pm the food and Bailey's was taking effect and she was out like a light. It's been a long day for her, and time to catch up on some rest.

Posted by alan at 10:06 PM | Comments (2) | TrackBack

All Move Again

Unfortunately someone on the ward took a turn for the worst last night so when I got there today the nursing staff had asked Jules if she minded moving out of her side room and into another part of the ward so that that patient's family could have a little peace and privacy. Of course, Jules had no objections so we popped downstairs whilst the staff sorted out the beds.

Jules even wanted to pop outside, so we went for a little wander round the carpark before it got too cold.

Anyway's, can't chat for long as I'm off to take delivery of our tea from the takeaway and get it back to the ward before it goes cold

Posted by alan at 6:15 PM | Comments (1) | TrackBack

January 9, 2004

Full of Beans

Just the best description of Jules this afternoon. I left work early (you can on Friday's, which is great ), and went straight over to the hospital, having not been up on Thursday night. And she was really awake, chatty, and full of beans

Pics in the extended bit...

Big, cheesy grins when I got there, soon replaced with orders to, "go get me a Sprite"

It was Janet's idea to give her the waterpistol, and she soon realised that that wasn't as good an idea as it first seemed

No night is complete without "it"

Although when I did ask for a smile, I'm not sure if this was any better

By end of visiting she was zonked, so we left her to catch up on some rest. She needed it, being more awake today than I've seen her in a long time

Posted by alan at 9:25 PM | Comments (0) | TrackBack

January 8, 2004

Throat On Fire!

Throats been on fire all day at work so I rang Janet and gave seeing Jules a miss tonight.

Off to bed, medicinal whisky in hand, to see if an early night will put the fires out

Posted by alan at 7:24 PM | Comments (0) | TrackBack

January 7, 2004

All Is Forgiven!

Popped in to see Jules today and she's had a really good day. She was really chatty, speaking a lot more than normal. And, it seems, we're back on talking terms once more
Pics and news in the extended bit...

This was Jules last night when I popped my head round the door and got told to "Bugger off" The face says it all really, don't it.

But tonight You don't know hoooow much I've missed that hug

She seems really awake, even after we'd got her changed and ready for bed. Chatty too, speaking more than normal. And she didn't seem as tired as in the past few days. A lot must be down to shaking off the cold she's had I guess.

Other news. She'll be moving soon, in order to improve and increase her care levels. It'll also mean a change in environment. So, if you're planning on visiting let either me or her mum know as she might have moved already. After Monday's episode the staff are reluctant to let anyone see her unannounced now, so it's even more important to let us know if you're planning on visiting. And once she's moved you won't be able to visit without prior notice.

Posted by alan at 11:13 PM | Comments (0) | TrackBack

January 6, 2004

F^%$ OFF!

Popped in to see Jules over lunch, see if she's okay after yesterday's turn. And I was told to go, in her usual fruitful language.

Happy? Not really . Someone I've never met, having explictly been told what his daughter's wishes currently are, has ruined things it would seem. I'm told by Jules family that this isn't unusual, but I'd been cutting him some slack, having never met him myself, and was trying to talk Jules into changing her mind. Instead, he's gone against her wishes and made us all out to be liars. Something I'm certainly not happy about .

Hopefully she'll have calmed down a bit by tonight. As for talking her round to seeing her dad, I'll leave you to work out my views on that now

Posted by alan at 1:59 PM | Comments (1) | TrackBack

January 5, 2004

Why Can't Some People Just Do As They're Told?

It started off with me feeling like crap, still full of cold (), and finishing with me getting accused of lying by Jules

She had a dizzy spell during physio which disorientated her and made her feel sick for most of the rest of the day, so she hasn't been on top form.

The other problem was that her dad decided to turn up at the hospital, despite her continual requests that he didn't. And, of course, that made me out to be a liar, since I'd promised her that we wouldn't tell him it was okay to see her if she didn't want him there. So because he did turn up, Jules is now accusing me, her mum, and the ward staff of lying, and is refusing to talk to me.

So, Jules now doesn't trust me or her mum, the nurses are in an awkward position with her dad threatening to turn up, unannounced, and against her wishes, and her dad doesn't seem to be getting the message that, thanks to his actions today, he's now the last person she wants to see at the moment.

Funny really, because on Saturday she'd said she'd think about seeing her dad after I'd explained how much he wants to see her. Having lost my dad when I was only 14 I was fairly convinced that despite everything that has gone on she should at least see him once. It now looks, after today's unannounced visit, that Jules is even more adamant that she never wants to see him. And with the trust in me and her mum gone for the moment, I can't see us talking her out of it.

It's amazing how one thing can spoil it for everyone

Posted by alan at 10:55 PM | Comments (0) | TrackBack

January 4, 2004

Long Day

I awoke today feeling rougher than I have for a while, this cold really getting to grips. Planning to spend the day sorting the house ready for next week, I instead didn't get up until 1pm, and that was only because Jules mum, Janet, had called to ask if my PC could be borrowed for some of Laura's school work.

I eventually managed to surface and pop into Argos to get a shelving unit for Jules hospital room. We popped in around 4pm, meeting up with Stu and Lisa, and just missing Tony and Jenny by a few minutes.

Pics in the extended bit...

Don't ask what the 2 frogs are doing, it's Tony's fault for putting them there like that. Jules just kept giggling when we asked exactly what where they doing?

She seemed quite bright and alert again, and we watched another couple of episodes of Fawlty Towers before she started to feel tired.

The chesty cough she's had for the last few days isn't a chest infection. The doctor saw her this morning and put it down to a cold, which I've no doubt given her. Tomorrow they'll hopefully sort out some medication, and I'm going to keep my distance, hard as it is.

Posted by alan at 9:47 PM | Comments (1) | TrackBack

January 3, 2004

Venturing Out!

Once finished seeing Jules it was my chance to catch up with some of the old Ventures as they were all back from Uni for the hol's. I'd already bumped into Nathan and Naomi on Christmas Eve, but tonight was the chance to catch up with Chris Neilson and the infamous MR COLE!

Some pics in the extended bit...

Chris, and Nathan, listening intently to another of James' wierd stories. I tried getting a picture of him, but the phone kept saying "Memory overload".

I did, however, manage to get a picture of his beer, which I hope to sell for big profit when he becomes rich and famous

Posted by alan at 11:40 PM | Comments (0) | TrackBack

Urgh! Not Fish!

Back up on the ward we watched some Fawlty Towers, which had Jules laughing once more. Her energy seemed to return as we sat there watching TV. Once her mum was there dinner soon arrived. But horrors - A TUNA SANDWICH!

Pics in the extended bit...

"Urgh" The face says it all, and despite the notice on the wall, the tuna sandwich had got thro'

"Sick" - one bite and Jules was feeling bad. Fortunately a spare Sausage and chips was found and mealtime recovered

Posted by alan at 11:30 PM | Comments (0) | TrackBack

The Gang's In Town!

Some of Jules ' college mates popped in to see her today. Chris, Lee, Dan and Adriano from her times at North Herts College had got in touch shortly before Christmas.

Jules was quite awake too, so we popped down the cafe for a catch-up and chat about the old days. It soon had her giggling

Pics in the extended bit...

Jules was soon downing her first Sprite, and listening in on what everyone had been upto in the last couple of years.

Chris and Dan, explaining where they've been, and what they're been up to

Adriano and Lee, listening intently to another of Chris's stories

Not sure what Chris was explaining at this point, but it had Jules in stitches

And no visit would be complete without witness to Jules now infamous gesture

Posted by alan at 11:29 PM | Comments (1) | TrackBack

January 2, 2004

Added Online

As so many have been asking I've added a complete file of Jules pics online. It can be found here:

Jules' Pics Online

Posted by alan at 12:12 PM | Comments (0) | TrackBack

Reading The News

Two bits of news caught my eye today:

BBC NEWS Health £12m pledged for terminally ill
BBC NEWS Health Warning over bed-blocking fines

Good and bad moves perhaps? Certainly giving patients more options and support for the family is good. And as long as each Bed-blocker circumstance is reviewed, and it's not turned into a "bums on seats" count.
But the news I still can't get my head around:

BBC NEWS UK Armed air marshals on UK flights

Being in the aerospace industry one of our product line's aim's to shoot down enemy aircraft. A good way to do this is with guns. Which is why I can't understand what they hope to achieve by having guns on board, other than piercing the aircraft skin and blowing everything out of the air. Which is kinda what the terrorists want, isn't it?

Posted by alan at 11:23 AM | Comments (0) | TrackBack

January 1, 2004

The First One of 2004

Urgh Full of cold, great way to start the New Year

Jules seemed well with it today, very chatty and awake. She's still writing out the shopping list, so I've a few days grace before being instructed to jump to it

Off back to bed to try and shake off the sniffels

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Happy New Year!

The door's are open, the coal and bread have been brought in by the first footer, the house is cleaned of the old and ready for the new.

2004 is going to be a hard year. Lets just hope some of the luck this time of year can bring comes Jules' way.

Posted by alan at 12:00 AM | Comments (0) | TrackBack

December 31, 2003

The End of Another Year

...and I think I've got the lurgy

A good friend from Uni days, Jane, popped up to see Jules with me today, and it was a great chance to catch up on over 2 years stuff She originally though Jules must be in hospital having a baby (seems to be what everyone else is doing ATM ) so it was a little bit of a shock when she realised what we've been through in the last year.

Jules seemed a little quiet and not all with it today, sleepy and tired, I guess from the intensive physio, aspecially given the Christmas break from it. She has managed to start writing a shopping list, the result of which will no doubt have me running around ASDA one night

Couple of pics in the extended bit...

We popped down the cafe for a cool drink, and chance to catch up with what Jane's been upto since we'd last seen her 2 years ago.

Jules seemed a little more tired than yesterday, but still had the energy to slap me and listen in on all the goings-on

Posted by alan at 5:11 PM | Comments (0) | TrackBack

December 30, 2003

Futhermore

Continuing from the earlier entry, 2 more things highlighting that she's still, "Compus-mentus". It's her brother's birthday today, Stu, so we went to get a card from the hospital shop.

1. She insisted on buying a card with boobs on it


2. She signed the card, Julie & Alan Bell. I questioned this and she gave me that look of, "Yeah, and have you got a problem with it"

Posted by alan at 4:58 PM | Comments (0) | TrackBack

The Latest

Jules has had an assessment from the local hospice, Letchworth Garden, and they'll be giving their answer next week. It look's likely that she'll be moving there soon, since the level of care at Lister isn't as high as that at the hospice.

As for Jules herself, things are still progressing slowly, although some things are taking a back step. Her energy levels seem to go up and down each day, with some days full strength, and others no strength. She's still able to communicate, read, and give as good as she gets. It's now more of a case of picking a good day to chat. On the bad days she's simply too tired to try, and needs lots of encouragement to try.

Physio and occupational therapy continues, but struggles with her energy levels. She's now taking days out when things are too much, so it isn't a daily routine as before.

A friend mentioned the other day, "Has she lost her marbles?", which I could understand as she's not anything like she used to be, the chatterbox of old. But I soon put them to rights, explaining she's still got an eye for detail, reading anything she has to sign (student loans being one), and writing down lists of things to be done, bought, etc...

Posted by alan at 4:44 PM | Comments (1) | TrackBack

December 29, 2003

Busted Bed!

Got there today to find Jules bed in bits on the landing by the lifts. It would appear that it's busted

Got some pics of her reaction once the bed was back and she was safely tucked in once more...

Busted Bed!

"Oh dear"

When I pointed out it couldn't have been me, despite her pointing, as my dainty frame wouldn't have caused strain to the bed mechanism, she laughed

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December 28, 2003

Big Day In Bed!

Last night was a party to end all party's, or at least that was Tez's opinion of the night out in Stevenage Early start for him and Ian as the Hull City game against Doncaster is on and they're off to it. Me? I'm off back to bed to catch up on me sleep, and then wave off Nige and Mum.

Pics in the extended bit...

Nige and Tez, ready for a night out, even if the divine light is only shining on one of them

Ian just sits in awe of it all.

Soon time to move onto Hogshead, so drink up boys...

Nige needs a little encouragement, although headbutting wasn't what we had in mind.

No sooner are we in Hogshead than Tez is already playing the prank, Ian finding more than a cushion to sit on

Chris turns up, better late than never

Ian's well into the party mood now, his hands a blur of dance moves

It was then a move onto Chicago's and time to settle into the party groove. Ian grabbed a drink and began sharking

GET 'ERE

Soon the cracks were starting to show, Nige looking a lot worse for wear...

...and me not far behind

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December 27, 2003

Big Night Out

Ian's mate, Tez, is coming down today so we're going out and showing him the sights and sounds of Stevenage

Popped in to see Jules after he'd turned up, some of Jules ' college mates are popping in (UPDATE: Only Chris was healthy enough, Dan and Adriano were full of cold). Jules brother Stuart just won't let an opportunity go when it comes to making his sister suffer in the food fights. Many instances in London ensued, which never got caught on camera, with cream flying in the ward. And then there was that time that Jules thought I needed a hairwash with one of her custard puddings

So, to see the latest escapade click on the extended bit...

Oh, I took the water pistol in too, and that went down a storm

Jules , in a rather energetic mood, probably brought on by the waterpistol she'd got for Christmas.

"Take cover!", as Jules starts using the pistol. Her Uncle Laurie got a full soaking.

So, in return, Stu got her pudding and stuck the spoon on her chin

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December 26, 2003

Boxing Day Sales

Thought we'd pop into town for the sales, only to find that everywhere's shut

Did manage to get my bluetooth adaptor, so will hopefully have it set up and ready for downloading pics soon

Off out for a drink with Nige and Ian, a quiet one down the Old Town since they're saving themselves for tomorrow night and Ian's mate, Tez, coming down.

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December 25, 2003

Christmas Day

We descended on the hospital en-mass and gave Jules a Christmas to remember. Lots of pressies, some drinks, and plenty of happy times. Need to crack on and get dinner ready now, as we're starvin'

Pics in the extended bit...

Jules was looking very cheerful and awake when we got there. And soon everyone had arrived, and the presents could be opened.

First up was the alcohol, permission given, so a large bottle of Smirnoff was cracked open, and her cheeks were soon a rosey red

Jules , drink in hand, and me with my special Christmas bear, celebrating a cracking day

A lovely cross pendant from her Aunt Jenny and Uncle Tony. Also notice her cheeks, by now the drink's taking effect, and she can't stop smiling

More presents, a giraffe no less

And lots of smellies, including probably most of Bodyshop and Boots

All in all a grand day, with lots to open, and lots to be happy about. I'd just like to thank everyone for all the gifts and cards, which are arranged all over her room now

Merry Christmas Everyone!

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Christmas Eve Pt2

I know it's Christmas Day, and it's late too, but last night was not a quiet one (thanks Chris ) I have the hangover to kill all hangovers, and no recollection AT ALL of what happened when we left Chicago's

Pics of what happened in the extended bit...

Chris, jugs in hand, setting himself up for the night

...and before you know it, he's got some "friends" to share his drinks with

Soon the bar is but a blur...

Old friends, Nathan and Naomi, out for drinks with friends - haven't seen either of 'em in over a year

A friend of Chris and Stuart, who's name completely slips my mind

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December 24, 2003

Christmas Eve Pt1

Popped in to see Jules .

Chris is on about going out for a drink, but I feel shattered. Might just pop out for one or two, but really need to be home early to catch up on some sleep and get things ready for the family arriving.

A few piccies in the extended bit...

The happy couple settling in for the night. Well, I'd have stayed, but was told "No" and "Hurt" by Jules . I also got the look

Jules face says it all, "Oh no, not again"

"Gis a kiss"

She seemed really cheery tonight, but still really tired, being off to sleep shortly after we left. Can't wait 'til tomorrow and bringing in all the pressies. Would've been nice her being home for it, but someone up high decided not.

Posted by alan at 7:55 PM | Comments (0) | TrackBack

December 23, 2003

Video Night

Tonight we watched Legally Blonde 2, very funny. And with Strawberry Cheesecake, a selection of indian snacks, Coke and a smile

Oh, and whilst I remember, there's some more pics dotted around the December weekend in Hull, so have a look thro' the December archive.

Chrismas Eve tomorrow, soon be Christmas Day

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Shaking!

Awoke this morning to the news of an earthquake out in California

Earthquake rocks California coast

Fortunately it didn't affect the guys in SF, and we didn't experience one when out there. But the pics are bad enough

Posted by alan at 1:15 PM | Comments (2) | TrackBack

December 22, 2003

What U Lookin' At?

Jules was a little tired tonight, so I didn't stay long after dinner. Gave me chance to go and get those last minute Christmas gifts

Of course, once home my attention was required by someone feeling a little left out of it all...

New "Cat-in-a-bag" It can't be comfortable in there, can it?

"What you lookin' at Buster?"

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December 21, 2003

Lots of Visitors!

Jules had a load of visitors today

Geoff (aka Leonard), Ruby and Ruth (friends from Cambridge), Sy (work mate), and Jules Aunt Lyn and Uncle Laurie amongst others.

Tiring day, but she was able to throw a smile when it counted...

I really wish she'd put her finger away once and a while.

Hooray, a picture of a smile and no finger

Posted by alan at 6:49 PM | Comments (0) | TrackBack

December 20, 2003

Long Time No See

Jules friend from College days, Lee, popped in to see her today. And she seemed a lot more chirpy than Friday. I guess after the partying excess of Friday she'd had chance to recharge those batteries.

Don't think that grin could get any bigger

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December 19, 2003

Tired

Jules was really tired tonight. Had a heavy day in physio apparently, and some of dinner went down the wrong way, so a coughing session really took the wind out of her sails.

So I left her snoozing. Not that I managed to creep out before being told, "Strawberry Cheesecake Ice Cream". Won't be allowed to forget that for tomorrow's video night

Pic in the extended bit...

Fast asleep, well, almost

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December 18, 2003

Party!

Jules had a christmas party down with the Physio team today we think. We can't be too sure as her memory's not all that good now, but the clues were in her attire...

Fast asleep, but still with her hat on

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It's Christmas!

Woke this morning to find we've had one heck of a frost over night. Winter is definately upon us, and Christmas now feels like it's round the corner. Forecast snow at the weekend too, so it'll be getting all festive by next week.

Pic in the extended bit...

The fleet, all cold and frosty

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December 17, 2003

Pissed Off!

That's all we could get out of Jules tonight. She's pissed off with something, but can't work out or explain what. It might've been dinner, as the smell on the ward was smoked/boiled fish, which would've gone down well - NOT

Not as chirpy as normal, but quite chatty.

Pics in the extended bit...

Whatever it was pissing her off was soon forgotten, and she was smiling again once more

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December 16, 2003

You're Back Then

Jules was happy to see me and Chris back from Hull tonight. Quite chatty and full of beans, we watched some TV and she drank a fair amount too.

Pics in the extended bit...

"You're back then" and she looked happy to see us

...but it wasn't long before she had her tongue out, spoilig the photo

Posted by alan at 11:54 PM | Comments (0) | TrackBack

Bits of News

2 stories of interest in the news:

BBC NEWS Health Chilling theory on bowel disease

Interesting, as it seems to go against the theory that the food and diet is the cause, and not the way we store it. And I've always wondered whether more medical issues are down to the environment we eat in, rather than the food we eat.

The other, more close to home, was on the PR stunt in Italy:

Eurofighter Typhoon On Top of the World

Not a surprise that the car won over the short distances, but once it was in the sky...

Posted by alan at 1:09 PM | Comments (0) | TrackBack

December 15, 2003

Full Of It

As mentioned, spent the weekend with Jules bruv Chris up North visiting the family. And feel like crap today Aches, shakes, sore throat, yeap, not good

Popped up to see Jules quickly, didn't stay too long in case I'm coming down with something. She's all smiles and laughter, which cheered me up no end. It's been a while since she's been like this, so something's obviously working

Early night and lots of Lemsips me thinks

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December 14, 2003

Owh Urgh!

What a night last night

Went out with Nige and Ian, Tez, Mum, Geoff, Pete, Lyn, and a few others. Chris ( Jules Bruv) had the whole Bev Road experience before going into Town and popping by the office.

Not sure what time we got home, but we're all feeling worse for wear. Doesn't help that it feels like I've a cold coming on too

Pics in the extended bit...

Nigel and Tez, one of Ian's mates, having a little disagreement before we got in the pub...

...which was understandable when we realised just what Nigel had come out in...

...and so the pair of them just wouldn't let it lie ALL night

"Get It Out!"
A quiet family shouting match, just the thing on a night out

Once in Mainbrace, it was jugs of Vodka Redbull, and Chris was, naturally, first to the bar

"Get It Out!"
And by the end of the night, Chris was out cold on the floor

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December 13, 2003

Whiskey Anyone?

Managed to get up to my brothers place in the country around 8pm last night. A couple of his friends, Glennnnnnnn and Cheryl were there too.

Good to catch up and fill them in on what's been happening in life recently.

And then there was the happy hour whiskeys

Pics up in the extended bit shortly...

Posted by alan at 10:51 AM | Comments (0) | TrackBack

December 12, 2003

Fact Not Fiction?

Nicking this link from Jonathan's weblog, not because of the frightening way TV is bending science into drama, but more to do with those involved:

Guardian Unlimited Life Never mind the facts

What's a little disturbing is discovering the guy who originally kicked off all this hysteria was from the Royal Free. These people have been giving us advice and treatment. Hopefully with a little more thought than this.

Bugger, it's on next Monday and I've just realised I'm out. Wonder if I can work out how the video works?

Posted by alan at 2:04 AM | Comments (0) | TrackBack

Updates

I've finally added all the pics from the US and days prior to me flying over. Best thing to do is click on the monthly archives for November and December to see them all.

More pics from the US will be appearing in the December posts once Phil's downloaded them off his camera, oh, and gotten over the flu bug he picked up off my old boss during our first training session this week

Posted by alan at 1:23 AM | Comments (0) | TrackBack

December 11, 2003

New Cinema Opens!

Yeap, thanks to Jules close friend Maria and her better half Carl, we had an evening watching Pirates of the Caribbean: The Curse of the Black Pearl. And what a funny film it was too.

No snogging on the back seats tonight, and the popcorn was a bit lacking. But a good nights entertainment. We'll wait and see what's showing on screen 1 next week

Posted by alan at 10:36 PM | Comments (0) | TrackBack

New Muscle Treatment Starts

As Jules has high muscle tone, a common thing post-stroke, it's becoming more and more difficult to do physio without causing her discomfort. Part of my chat with the doc from Northwick Park on Tuesday included an explaination on trying a treatment using Botulinum Toxin.

Jules had her first injection today, with her mum around just to see what's what. And Jules seemed quite comfortable tonight, but more of why in my next post. I'm just hunting around for some pics, you'll understand when you see

Posted by alan at 10:05 PM | Comments (0) | TrackBack

Thanks!

All the emails of support, it's nice to know some people are grateful of what I'm doing here, and are reading it. More so that the info I'm posting is plenty enough to keep you all in touch with what's happening.

Thanks again

Posted by alan at 1:57 PM | Comments (1) | TrackBack

December 10, 2003

Sussed!

Having explained to Jules where I went over in the US, including the more adult style of burger bar (Hooters), I got the usual treatment from her tonight.

Pics in the extended bit!

I know what you were up to

Posted by alan at 10:29 PM | Comments (1) | TrackBack

And Another Thing

Some people STILL seem to be getting the wrong end of the stick over the purpose of this weblog.

It's a place for me to post the news as and when so I DON'T have to sit late at night calling and emailing everyone. And also a place I can post up happy times, as well as sad.

So, for those still moaning about the lack of information, sorry, but when there's nothing to post, there's nothing to post. And, again, for the benefit of all, thank you for the info, support, and help, and apologies for not replying to each and every individual note. I've assumed posting here would be sufficient, since I've not got the time to thank everyone individually. What can I say? Sorry.

Posted by alan at 1:22 AM | Comments (0) | TrackBack

December 9, 2003

Change of Plan

Having now had a chat with the doctor from Northwick Park the picture is now a little clearer. Jules will not be coming home after all, the concern being that space in our house isn't sufficient for all the equipment. And the other news also means things are getting a little more serious a little more quicker than we had planned.

Given the current prognosis and the rapid deterioration in her condition the doctor's now think it will be lucky if she sees the other side of the summer next year.

You can only imagine how I feel right now, I thought we had 296 days, it turns out we might only have 204.

Our house has suddenly fallen quieter than ever before tonight

Posted by alan at 10:17 PM | Comments (0) | TrackBack

December 8, 2003

That'll Be The Bed Then...

...or at least that's what I would've been saying tonight if I'd not explained to Community Equipment that they'd have a job trying to fit a hospital bed, hoist, commode, and wheelchair in our living room More so if they're not going to move all the furniture out first.

Looks like our little chat with the Occupational Therapist tomorrow's going to be fun

Posted by alan at 11:46 PM | Comments (0) | TrackBack

December 7, 2003

Back!

I'm back in the good ol' UK, and once I've worked out what time it is, and don't feel knackered I'll start posting up some of the pics.

Posted by alan at 2:25 PM | Comments (1) | TrackBack

December 6, 2003

Upper Class!

In the Upper Class lounge at SF airport, and lovin' it

Internet access, free food, free drinks, it's heaven

Better get off now and go and have a bite to eat as it's lunchtime here.

Posted by alan at 10:50 PM | Comments (0) | TrackBack

December 5, 2003

Homeward Bound!

Signing off now, as the course has ended and we're off for an afternoon and evening catching the tourist thing before we jet off tomorrow morning back to Blighty

Gonna miss the place, as it's been a great week, loads to do, and a chance to see things I wouldn't otherwise get the chance.

Posted by alan at 9:14 PM | Comments (0) | TrackBack

More Good Vibes!

Reading Ivan Noble's diary on the BBC, he's filling us all with hope:

BBC NEWS Health Tumour diary Interesting times

Oh, and it's still raining here, and forecasts more to come

Posted by alan at 5:45 PM | Comments (0) | TrackBack

Passed Test - 100%!!

Just done my second test of the week, this time on P100 Primavera for Enterprise: Methodology ManagerPrimavera, and passed with full marks.

So, I'm now a qualified Methodologist, something to put on the ol' CV eh

Posted by alan at 12:08 AM | Comments (2) | TrackBack

December 4, 2003

Virus Attack!

Looks like the world's under attack once more, work email seems to be locked down again.

Symantec Security Response

Oh, and it's raining again

Posted by alan at 4:59 PM | Comments (0) | TrackBack

December 3, 2003

Passed Test!

Just done my first test of the week, P106 Primavera Project Manager for Enterprise: Advanced Course, and passed with flying colours (well, 95%!)

So, it's off to the bar for a drink, and chance to relax before tomorrow's test

Posted by alan at 11:43 PM | Comments (2) | TrackBack

FIRE!!

Just had a false alarm fire in the office. Fire engines, firemen, sirens, everything. And they don't hang around either

Pics in the extended bit...

The fire brigade arrive

And drive the wrong way up the street, against the flow of the trams

Posted by alan at 9:08 PM | Comments (0) | TrackBack

Cable Cars

Getting around town is different, and with all the steep streets it's a great laugh going around on these things

The cable cars don't go real fast, that's the electric trams. And they go along like silver and green bullets, a real fast way of travelling around the place.

Hopefully I'll have some real pics to pop up when we get back. But until then, have a look at the San Francisco Cable Car website.

Posted by alan at 5:45 PM | Comments (0) | TrackBack

What A Diner!

Went here for dinner last night (remember it's 9am here, not 5pm as the posting date suggests):

Hooters Diner, San Francisco

Bit of an "eye-opener", not exactly your typical McDonalds

But the food and beer was excellent

Posted by alan at 5:03 PM | Comments (0) | TrackBack

December 2, 2003

Some More News

Surfing over lunch I found a few more stories on the BBC website. It's the only way to keep in touch with what's happening the other side of the pond

BBC NEWS England Emlyn Hughes fights tumour

BBC NEWS Health Tumour Diary Tying the knot

BBC NEWS Health Tumour diary Things are looking up

Posted by alan at 11:34 PM | Comments (0) | TrackBack

Day 2!

Well, the second day of the course has started, and despite assurances, it's STILL pouring with rain, an unseasonal thing I'm told

Strange things I've noticed:

Bathroom's
The light switch is a switch. IN THE BATHROOM

Weather
California is the sunshine state, but as the link shows, it ain't at the mo'
National Weather Service Radar Image - Short Range Base Reflectivity - San Francisco Bay Area, CA

Crossing The Road
The car's wait for you, rather than beep the horn and force you outta the way

Clothes
Cheap, cheap, cheap 2 pr of Gap jeans, and 2 t-shirts, all for £64 And DVD's aren't too badly priced either.

Posted by alan at 4:34 PM | Comments (0) | TrackBack

December 1, 2003

Hello from the US!

I'm here! Been raining for over 2 days now, just like back home.

Went over the Golden Gate, so I've now done the 2 longest suspension bridges in the world, assuming that the Humber Bridge is STILL the longest

Beer - expensive
Clothes - well cheap, I've got a whole new wardrobe, although I've needed it given the weather
Hotel - cool, big room, big bed, although no breakfast

Time difference - it's 10am, even tho the posting is 6pm. Jet lag's weird, you feel hungry at the wrong times, and regardless of the daylight you feel knackered at the wrong times.

Course is going well, and the people on it seem cool too.

Posted by alan at 5:57 PM | Comments (0) | TrackBack

November 30, 2003

First Full Day in The USA

I know this is a cheating post, as I couldn't have done it before getting in the office. But now I've got the pics I can post up what we did today.

Click away in the extended bit for the lowdown

The breakfast in the Upper Class lounge was amazing. The sausage sandwich was posh (see above), and champagne and doughnuts was unreal (see below)

Oh, and the beer wasn't too bad either

And proof of it all, my Upper Class ticket

We spent Sunday running around town seeing the sights, oh, and drinking the beer

Phil enjoying a cool one in Lou's Blues Bar.

Posted by alan at 8:59 PM | Comments (0) | TrackBack

November 29, 2003

Time to Fly

Well, the limo's here, so it's off to Heathrow we go! I'll post up pics and news once I've worked out some way of downloading and posting, so it may be a case of coming back to the posts later next week.

Posted by alan at 8:02 AM | Comments (1) | TrackBack

November 28, 2003

Last Night in UK

My last night seeing Jules for a while, and I'm getting real excited about the flight now.

Jules seemed okay tonight, chatty for a change, and we've got Nick Fisher's TV installed (cheers matey ), so hopefully she won't get too bored with me not around. Although she didn't seem too bothered with me going away.

Pics in the extended bit...

Jules , smiley

Shock, and horror at the latest developments in Eastenders. I feel sorry for the staff on Sunday when Jules will be screaming for the omnibus to be on

"See ya then, cheers, have a good time"

Posted by alan at 9:00 PM | Comments (0) | TrackBack

November 27, 2003

Says It All Really

A recent posting on the Brain Tumour UK Support group says that this years stats show brain tumours have now overtaken leukaemia as the leading cause of cancer related deaths.

So, Jules fought leukaemia when it was the leading cause and won. And now she's fighting a brain tumour, which is now the leading cause of death.

Someone's obviously trying their hardest to make her life hell, ain't they

Posted by alan at 9:21 AM | Comments (0) | TrackBack

November 26, 2003

Struggling To Post

Sorry for the lack of news, but a combination of a dog slow connection at work, and a lack of service from NTHell means I'm unable to download pics, post 'em, add comment's, or email without:

• Loosing me rag, or


• Throwing my work PC across the office

And since both are detremental to my well-being, I've refrained from posting the last few days

Thank God that Orange have come up trumphs so I can at least read my email on their photophone. Many thanks for the support and words, all of which we're passing on to Jules .

Posted by alan at 12:13 PM | Comments (1) | TrackBack

November 24, 2003

We've Reached The Peak

and now it's all down hill....

Northwick Park assessed Jules today, and have decided that she would not benefit from rehab. She's as good as it'll get now, and the best thing for her is to come home, probably in the New Year, for family TLC.

Better go and start looking for somewhere for the pair of us to live then, does anyone have one going free?

Posted by alan at 1:26 PM | Comments (0) | TrackBack

November 23, 2003

Moving Down

Jules has moved down to the stroke unit this evening, her new home until the rehab unit comes up trumphs.

Pics in the usual place...

"We're off, and I really wish you'd stop taking snaps"

Posted by alan at 11:29 PM | Comments (0) | TrackBack

November 22, 2003

Da Bruvs Hit Stevenage!

Well Janet's washing machine broke down a couple of weeks ago (bearings) so Nig and Ebo needed an excuse to pop down and hit the town.

Arrived about an hour ago, we're off into the Leisure Park, pics will be displayed in the extended bit once we're back and sober

First stop, the Hogshead and Weatherspoons in the New Town.

Da bruv's having a laugh and a smile

Then off to Smooch (aka Square) in the Leisure Park.

Jules ' bruv Chris, having a drink, for a change

Before drinking up, and running over to Chicago's, were it HAD to be Ian's round, only Chris got 'em in instead.

"No-one will let me buy a round"

"Calm down Ian, at least Al didn't go and buy you a baguette..."

"Stop takin' pictures you t..."

And so we left Chicago's and wandered off to Jumpin' Jaks.

Nigel, suitably wasted

Posted by alan at 8:45 PM | Comments (0) | TrackBack

November 21, 2003

Back Home

Nope, not Jules , me. Having been away for a couple of days on a user conference with work, in sunny London. And it's great to get back.

Jules seems a little more chatty, but her mum seemed to think she was a bit down today. Not that that seemed to be when I got there, the slaps and cuddles still in full force. She's moved bays as well, so is in the main bit with everyone else.

We'll try and see if we can get her out and about this weekend, weather permitting.

Posted by alan at 9:06 PM | Comments (1) | TrackBack

November 19, 2003

No GPRS!

Orange have taken down one of their transmission masts for maintenance, and the back-up mast at Todds Green has failed as a result. So there's no coverage so I can't download pics for the website until tomorrow evening

All the more reason to buy a Bluetooth adaptor for the PC, ain't it

Posted by alan at 1:19 PM | Comments (3) | TrackBack

A Moment

Just got a nice email from my aunt and uncle this end of the country (thanks A&S )

Recounting some of the more personal problems with life at the mo', stuff not published here, and I got to the point of explaining how it's taken me 3 months to fill in Jules deferment letters for her Student Loans. They obviously need to know what's happening, but it's taken this long to get my head straight enough to write it out, coz it keeps bringing back the facts. And by putting into print what we're told, am I giving up hope that we'll find a miracle?

You know, thinking about it, it add's to the list. The one that Jules and I will take great pleasure in addressing in 316 days time when the miracle has taken its course. Loose hope, nope, more like give us something more to fight for

Posted by alan at 12:47 AM | Comments (0) | TrackBack

November 18, 2003

Pornography In Hospital SHOCKER!

If you could see the pornographic filth that Jules ' aunt and cousin brought into the hospital this evening, you'd be as shocked as I. The fact I've not seen that twinkle in Jules eye for quite a while is beside the point. Having a calendar of naked rubgy players with convienently positioned rugby ball's shouldn't be allowed.

To give you an idea of the effect it's had, a couple of pics are in the extended bit...

Jules , getting far too cheeky, cheered along by men's naked cheeks.

Jules and her cousin Jo, happy to see all those naked bums

In other news, Jules may well be moving down to the stroke unit tomorrow, to begin her rehab. It'll be supported by an outreach team from Northwick Park, the waiting list for which is still as long as ever

Posted by alan at 9:50 PM | Comments (1) | TrackBack

November 17, 2003

Pictures Say More Than Words

Jules ain't speaking much, which is a pain as you really have to second guess what she's after. However, a bit of brotherly love and she was screaming the house down.

Pics in the extended bit...

Well, I say "brotherly love", as Jules was shouting, "Oy ya bastard", much to the nurses bemusement

Stu and Lisa brought in lots of goodies, including Ribena and plenty of chocolate. Which Jules promptly set to and demolished double quick time.

Nothing gets between a woman and her chocolate

Posted by alan at 11:36 PM | Comments (0) | TrackBack

Can't Believe It

After hearing the guy had had a blackout before the GB Rally, I'd never had guessed what had caused it:

Richard Burns diagnosed with brain tumour

They say 1 in 10 have a brain tumour, and that's pretty scary when I look around our office of 30+

Posted by alan at 2:03 PM | Comments (0) | TrackBack

November 16, 2003

A New Addition

Something new has arrived on the ward, (see right) thanks to Jules ' Aunt Jenny and "Delboy"

You don't want to know. Apparently it's called Alan, and whistles at you whenever you drop it on it's bum I can't see the similarity, can you?

Posted by alan at 9:33 PM | Comments (0) | TrackBack

WOW!

Digging into last months web stats, just to see if the stuff is being read and looked at. And a staggering 1,897 requests were made to the site in October

And following in the footsteps of the Great Escape, the The Greater Escape comes in as the most viewed page for the month.

So, there's lots of people reading, why not drop us a comment

Posted by alan at 10:45 AM | Comments (0) | TrackBack

November 15, 2003

Urgh!

The Conversation:
"What we can do, then, is pop down the snooker club, have a couple of jars, get our minds around the algorithms involved, pop to The Stag, have a couple more, pick up the curry, then go home and program it in...." or at least that WAS the idea late Friday afternoon at work.

What actually happened was a little more alcoholic, and a little less programatic

I know understand VB and lots on Excel, only I've a stinking headache and need to sleep the rest of the day. But it was a good night out mate

Posted by alan at 2:53 PM | Comments (2) | TrackBack

November 14, 2003

The Diagnosis

Having now got a detailed description of Jules tumour, as with other info, it's posted here.

Jules has:

1. Malignant meningioma (temporal fossa, Caverno-sinus, Suprasellar)


2. Right sided MCA infarct

In 1988 Jules was diagnosed with acute lymphoblastic leukaemia which was treated with chemotherapy and radiation. She also received a bone marrow transplant in the same year.

In 2002 she developed left facial weakness, unsteadiness on her feet, and a tremor affecting the left side and poor memory. Her MRI showed a large middle fossa, right sided meningioma which was partially debulked in April 2003.
She continued to deterioate with regards to her vision and a repeat MRI scan showed an increase in the size of the tumour with deviation of the optic chiasma. She had frontal craniotomy and subtotal excision of the residual meningioma on the 21 August 2003. This was complicated post-operatively with right MCA infarct resulting in dense left hemiplegia and complete right 3rd Nerve palsy. She then developed a large subgaleal collection, CSF confimed infection and she was treated with the relevant antibiotics. She then also developed mild diabetes insipidus and she is currently on DDAVP.

She has regained some power in her left leg, however none in the upper limb. Her speech was affected, however this is gradually improving. She initially had an NG tube which was removed, but replaced when she was sick. She is able to eat soft foods, pureed or chopped up. Her memory has not worsened following her surgery and generally she is not depressed. She has pain in her left side which is relieved to a certain extent with correcting her posture.

Posted by alan at 2:06 PM | Comments (0) | TrackBack

We're not alone!

Surfing the BBC News site, as I do every day (cheaper than buying a paper ), I came across this:

BBC NEWS Health Ivan Noble's Tumour diary

A brilliant uplift reading this, if only knowing that someone else out there is suffering, fighting, and winning
Good luck for the op BTW

Posted by alan at 1:32 PM | Comments (2) | TrackBack

November 13, 2003

What Are You On?

So that as many people have an understanding of Jules treatment I'm aiming to post more and more detail on what's what. This one covers a comprehensive list of the drugs and medicines Jules is taking.

Name	Dosage	Interval
Thyroxine	100mcg	1 x daily
Paracetamol	1 g	4 x daily
Codeine Phosphate	30 - 60mg	4 x daily
Ranitioine	150mg	2 x daily
Senna	10ml	2 x daily
Milpar	10mls	2 x daily
Baclofen	10ml	2 x daily
Hydrocortisone	20mg	3 x daily
Clexane	20mg	1 x daily
Desmorpressin	10mg	1 x daily
Multi-Vitamin's & Iron	1	Every morning
Evening Primrose Oil	1	Every morning

Long ain't it

Posted by alan at 11:51 PM | Comments (1) | TrackBack

We Already Know

Reading the news this lunchtime brings up this story:

BBC NEWS Health NHS 'is failing stroke patients'

Well, we know this, it's been over 7 weeks since Jules was refered to Northwick Park, and with only 19 admissions to a 25 bed unit in the first quarter of the year, it's going to be a long wait before she moves.

Posted by alan at 1:16 PM | Comments (0) | TrackBack

November 12, 2003

All Settled In!

Jules is finally settled in and has had her first full day at the Lister. And everyone's popping in to see her now that she's only just round the corner.

A few pics of the happy couple in the extended bit

The bed's big enough for the pair of us...

... although I still get the customary slap

Posted by alan at 10:16 PM | Comments (0) | TrackBack

November 11, 2003

She's Here

Jules has arrived at Lister Hospital, and settled into the ward. She's got her own side room, very posh, and TV too

Big bonus is I can visit every day now, regardless of work finishing times. And visiting is 2 'til 8pm every day, so weekend's are going to be longer too

Posted by alan at 9:36 PM | Comments (0) | TrackBack

On The Way

Jules is definately moving up to Lister today. The reason being she needs specialist endocrinology treatment as her serum sodium levels are rising and falling far too quickly, and have become dangerous. Noticably she's less chatty, as it affects her mental status (part of the ADH (anti-diuretic hormone) treatment remember The Scientific Bit?)

The Lister specialist will be able to get a grip on the control, hopefully, and administer a better dosage and bring her back to normal, once we can define what normal is for Jules

Posted by alan at 3:39 PM | Comments (0) | TrackBack