< October 2003 | Main | December 2003 >
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:
- Malignant meningioma (temporal fossa, Caverno-sinus, Suprasellar)
- 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
November 10, 2003
Record Broken
Well, it's over 24 hours since he lifted himself off the bed and out the house. Who's this you may ask? Well, click on the extended bit for a pic
Just about manages the top of the stairs, before collapsing with exhaustion I really can't quite work out what keeps him going, or not as the case may be. I thought Nig and Chris loafed a few weeks back, but ol' Spit's takes the biscuit.
Posted by alan at 11:48 PM | Comments (0) | TrackBack
Moving!
Well, it would appear Jules is off to Lister in the morning. I'll keep you posted on what's what, but don't make any plans on visiting her in London anymore
Not much of an explaination as to why now and not 6 weeks ago, but I'll endeavour to get to the bottom of it all tomorrow when I've calmed down and had chance to sleep on it.
Posted by alan at 10:20 PM | Comments (0) | TrackBack
November 9, 2003
At Last, A Proper Meal!
After Friday's disappointment, Jules was well and truely chomping at the bit. So, making sure that the Rat and Parrott did Sunday meals, we sorted getting the wheelchair, and we were off
Pics in the extended bit...
All wrapped up and ready to go
Tonight's meal, Pork & Leek Sausages with Mash & Onion Gravy
Mmmmm, no chance of conversation, as Jules stuffs herself full
Getting a smacker in the face
Peace Man
Then it was time to get back to the hospital, the night finished.
"Shhh, no-one's looking, I can have a quick shifty"
Time to go home, and none too happy
Posted by alan at 10:39 PM | Comments (0) | TrackBack
November 8, 2003
Bonfire Night - Leyshon Style!
What a cracking night Food, wine, and plenty of BIG bangs. And then a post-firework display of card tricks (be warned everyone, Sy's practising them in preparation for Christmas )
Chris popped in to see Jules , and I got a call, sleepy head
Pics in the extended bit...
A catherine wheel, spinning away, before it shot off, setting fire to the tree and surrounding garden
The throng, watching in awe, before scrambling for the nearest cover as it breaks from the tree
More posting up as I get round to it.
Posted by alan at 11:47 PM | Comments (0) | TrackBack
Football Luck
Went and joined the throng at Stevenage Boro today, Sy explaining it's a cup game, and it has to be done. And also, last time I went with Jules , they won 2-1, so there's always the thought us pair bring good luck.
And as a little gamble, in light of Jules luck before, I thought about placing a bet, since the odds were quite good (10-1).
FA Cup Stevenage 2 Stockport 1
Shame my home side didn't fair as well , but Jules and me must be a charm at the Boro Lets hope she can bring the luck next time, and scream from the stands like before
Posted by alan at 5:27 PM | Comments (0) | TrackBack
November 7, 2003
Time For Coffee!
Was going to be a night in the pub having a normal meal, but the cook wasn't cooking, so we had to cut short our drinking and take a stroll down to Starbucks.
Pics in the extended bit...
A strawberry milkshake, and large chunk of carrot cake. What's not on the pic (it's been eaten) is the Chocolate Indugence cake, which went down a treat too
We're enjoying the night
Slurpping away on the 'shake, listening in on Chris's day at work
Posted by alan at 11:31 PM | Comments (0) | TrackBack
November 6, 2003
Ready For Takeoff
The exhaust on the car's blowing once more, and it sounds like an old WW2 Spitfire. Getting it to the garage tonight was fun, not being the quietest of things as you can imagine.
Chris and Stu "flew" down there to see Jules , whilst I got Sy to follow me up to B&G Motors in his new MX-5.
Chocks away
Posted by alan at 9:17 PM | Comments (0) | TrackBack
November 5, 2003
This Is What It's All About
See, it's amazing what a little care and attention can do. Oh, and the fireworks were amazing from the top floor
Posted by alan at 11:14 PM | Comments (0) | TrackBack
Just As We Thought
Have spoken to the Occupational Therapist this morning, and Jules has been in a great mood today. But then, she's had the attention and allowance to do her own thing, be it slower than someone else doing it for her.
I explained my worries, and she agreed that the ward should be doing more. There's no reason for her not to feed herself, or be dressed in her own clothes, beyond the limitations of time and staffing on the ward. So it's the nursing staff who need to make more time for her, not Jules inabilities to do what she wants to try and do.
So, tonight we'll be having some words....
Posted by alan at 1:28 PM | Comments (0) | TrackBack
A question
And I'm not sure I want the answer.
Whilst sitting here, drinking my Famous Grouse, I'm thinking.... If things don't work out, does this mean it's the last Bonfire night today?
I know I should be positive, but it's bloody hard, I can tell you.
Posted by alan at 1:20 AM | Comments (0) | TrackBack
No Reply
This goes out to all my friends, family, and distant contacts I don't get round to replying to.
It's not that I don't appreciate all the support, it's just I'm trying to sort my time in work, travel, visits, and sleep. The more time I spend with her, the happier she is, and that can be born out of last night's escapades.
So, please don't take offence if I don't acknowledge your support straight away. As a good friend quotes: 'If I had more time, I would have written a shorter letter.' (Pascal)
Posted by alan at 12:48 AM | Comments (0) | TrackBack
November 4, 2003
Forgotten
Just about sums up tonights visit. Are we the only one's caring any more ?
I really feel things aren't going as planned. No-one seems to be enthusiastic about getting Jules into rehab, and it's been over 6 weeks by my reckoning.
And then there's the staff. I really can't work out what the fuck is going on. We're asked to bring down clothes for Jules to make her feel normal, so they put her in hospital gowns. And if the clothes are in her locker, they assume they're dirty. But they won't look in her bag, because the clothes, "..should be in the locker.."
Food? Well, last week the occupational physio got Jules eating for herself, using a rubber mat under the plate. So where's that gone? And Lyn brought her some curry, a fav, and that's still in the fridge. Oh, and the soups? Err, well, still in her locker, I guess they must've thought they were dirty
And then there's the physio. The diagrams on the wall look really good, but they must be nothing more than a twisted art project, since no fucker seems to be paying any attention to it
The best bit? "Well, she has been seeming to be depressed today and yesterday..." Well, fuck me, what do you expect? You build her up with the dignity of finally feeding herself, in her own pyjamas, and even putting normal daytime clothes when doing physio. Then, take it all away, leave her in bed, wearing regulation gowns, don't offer her the food we've brought, ad she looses all hope of living, or so it would seem.
And what REALLY hacks me off? The fact that each one of those days that one of them makes her feel like shit, it's one less day for her to feel a milliion dollars
Posted by alan at 11:00 PM | Comments (0) | TrackBack
Some Interesting News!
Thanks to Carl for noticing this on BBC News:
BBC NEWS Health Giving cancer the 'nano-bullet'
Interesting reading, and no doubt something else to consider.
Posted by alan at 3:35 PM | Comments (0) | TrackBack
November 3, 2003
No Visits
I'm stuck at work, exam to do. Stu's stuck up Bedford way, work to do. And Janet's working late, trying to make ends meet. So Chris is popping in on his way home.
Exhaust has given up the ghost now, so this Friday can only get closer quicker.
Me? I'm at home cuddling a bottle of Famous Grouse, thanks due to Sy for the purchase. Keep's me warm, and ain't half making me sleepy
Posted by alan at 11:23 PM | Comments (0) | TrackBack
Northwick Park Are Here
The staff from Northwick Park are at the Royal Free today assessing patients. Hopefully they'll be able to give us a firmer date on Jules move, the ward staff will be pestering them for as much
I've still got searing pain in my calf, guess the sensible thing would be to go to the doc's
Posted by alan at 1:15 PM | Comments (1) | TrackBack
November 2, 2003
No Pub Tonight
Jules was still a little tired tonight, and with her Aunt and Uncle (Lyn &anp; Laurie) along with cousin Lee and better half Nicky, there was plenty of people to keep her busy.
Also, a home made curry to make up for the rather bland hospital food, which has really gone down hill the last couple of days.
Oh, and I'm liken to a pushbutton in the off position - not depressed
Posted by alan at 11:41 PM | Comments (0) | TrackBack
Can't Sleep
It's about 5am and I've the most excruciating pains in my right calf muscle.
I was wondering once what it must be like for Jules and the pains she suffers in her left leg, mainly at weekends when the physio lets her off. Cramps, twisted muscles, all those sorts of things.
I think I'm close now, I can't physically move my leg without the sensation of something wanting to pull and tear
Posted by alan at 5:08 AM | Comments (0) | TrackBack
November 1, 2003
Tired
You and me both. Jules was a little tired tonight, and I could've done with more sleep than I got too. So a quick visit.
But we did get to play Connect 4, and she did beat me. Which does mean she's still got the knack
Posted by alan at 11:33 PM | Comments (1) | TrackBack
Friday night
In summary:
Quick couple of pints at Riley's (happy hour), then off to Hogshead for the leaving do.
4 pints of Heineken, before poping over 2 Chicago's.
A pint in Chicago's whilst we wait for the doors of Jumpin' Jaks to open.
In Jumpin' Jaks, 10:30pm, a bottle of Vodka Blue. Jules bruv Chris turns up, and.....
Jules mum picks us up, we get takeaway, and I'm home by 1am.
If anyone can fill in the blank above, please drop us a line, usual address. BTW never made it into work so you win your bet mate
Posted by alan at 12:27 PM | Comments (0) | TrackBack