November 10, 2003
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.
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.
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
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
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.
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).
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
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.
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
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....
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.
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)
November 4, 2003
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
Some Interesting News!
Thanks to Carl for noticing this on BBC News:
Interesting reading, and no doubt something else to consider.
November 3, 2003
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
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
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
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
November 1, 2003
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
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.
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
October 31, 2003
Jules mum and friend are off to see Jules tonight, and I've a leaving do to attend. But first, a couple of cheap ones at Rileys, it's happy hour and I've got corporate membership, thanks to my social club, hurrah
October 30, 2003
What You Listenin' Ta?
Seems to have had rave reviews, many saying it's as good as 0898, and a settled song set when compared to the alcoholicaly induced previous albums.
I just await my copy in the post, eh guys
October 29, 2003
Getting Nearer The Exit
Jules has moved again, to the bed nearest the ward entrance, in case you're popping down there and find she's no longer in her bed.
Seems full of bubbles still, asking me for some rather obscure things to be brought in, but more importantly, a selection of her socks and Mr Men books
Now, I know I've picked on one of several characters, but I think this one sums up Jules to a tea But, I'm open to suggestion, so post a comment if you know of a better one
October 28, 2003
Since Maria and Carl were off down to see Jules tonight, (I know, directions weren't as good as they could've been!) I thought I'd take advantage of a night off and get in some pool. More so that now we get corporate membership of the local club through our Social Club
October 27, 2003
Getting ready to set off down the hospital tonight, and Jules Mum was sorting getting me "fully-comp" on the insurance, just for her peace of mind.
Well, when she enquired about doing this, the insurance company turned round and said, "Sorry, your insurance was cancelled last month"
So, Chris went down after work instead, and we had a night off.
October 26, 2003
The Greater Escape!
Well, a big surprise for me tonight, what I thought was to be a quiet night, waiting in the pub for our "shift" to see Jules turned out even better than I could've imagined.
Little beknown to me, but a crack team of escapee's were plotting a fiendish plan to crack out a longterm patient of the Royal Free.
Click away for the full photoshoot and news
Minding my own business, and next thing I know some blonde's grabbing me in a hug and kissing me
The first drink of the night (and first proper drink in 10 weeks), and God, does it taste good
Jules brother, Chris, trying to catch us in an intimate moment
Well, it wouldn't be Jules without the now customary gesture
Time to head back before anyone notices Jules missing off the ward
October 25, 2003
Well, as the title says, can't think of any other way of describing her tonight, in fact over the last couple of days. Chatty, more awake, with it, witty, just everything buzzing more than before
Well, Chris and I are off for a beer to celebrate, so click away for the pics and news
A new pudding, sponge and custard, which seemed to go down rather well.
Another teddy bear (that's 8 now )
"No photo's please, and I'd have thought you'd have gotten the idea by now..."
The glint in her eyes is back, she's giggling for England once more...
... just a shame she has to spoil it by picking her nose
Guess what came in the post today????
a letter from the taxman
Except, it's a rebate, and a MASSSSSIVVVVVEEEE one - wooohooo
It's not the end of our finanical woes, but it certainly helps. Thankyou Sandra, whoever you are
October 24, 2003
If you've been down to see Jules recently, or spoken to Stu, her brother, you'll understand the title of the post.
Tonight I got my love munching
Jules was in a great mood. Full of beans, giving me hugs, kisses, and long. long chats. I'm so happy, you can't imagine
B17 is GO!
It look's like the alternative treatment is a go
Stu's talked to the clinic, and they've arranged for the tests with the Royal Free and Jules registrar. It'll be a few days, week, whilst they analyse the results, and then we'll be arranging for a chat with them.
But it's looking a bit more hopeful and positive than earlier in the week
October 23, 2003
Didn't go down tonight, Jules friend Maria & husband went down instead. And didn't ring, as I was otherwise busy putting the world to rights and eating a fantastic curry round at a mates house.
So, a night off, the throat well and truely sorted. And it's the weekend. What more can you ask
October 22, 2003
Links with stories, advice, and explainations of things.
Brain Tumours - Frequently Asked Questions
Understanding Brain Tumours
Yahoo Group Brain Tumours UK
brain-tumour.net - site dedicated to sufferers and their stories
NYU School of Medicince Neurological Surgery
Online Brain Tumour Support @ NYU
This is one of the places we're looking into:
No much on their site, seems a typical corporate one, lots of news all in one go when first kicked off, and been stale for nearly 12 months. But Stu, Jules brother, has been chatting this afternoon and it sounds like a go-er. Hopefully we can get together soon and find out what options are available.
And She Pick's Up The Phone
Rang again tonight, throat bareable, but as friends at work pointed out, probably not a good idea going to hospital and breathing germs over everything.
Plan: Ring when Stu's there so he can sort the 'phone out for her.
Actual: Ring Jules , no Stu, but she pick's up anyway - that's my girl
Rest of the night, bath, TV, curry, and then a web search for support and people's stories. Snag is, I don't feel half as happy now as I did a couple of hours ago on the phone
My throat is slowly starting to catch fire again, a pre-warning of impending flu. So a night in drinking Lemsips for me instead of going down to see Jules . But the bonus has to be the 'phone by her bed, so I was able to chat to her instead.
She's looking and feeling good, apparently, as Chris popped in on his way home last night. The tube's still goosed, so it's a longer than normal journey, so be warned
October 21, 2003
Travel, travel, travel
Well, after the problems on the Northern Line this weekend it seems the easy option of getting there by train is no longer true. Jules brother, Chris, tried last night after work, only to find that the replacement bus driver didn't know where he was going either. Great
However, the good news of the day was confirmation from my work's travel office that the trip over to the US in December has been booked. Flying Virgin Atlantic, and staying in the Hotel Union Square. The big bonus for me is:
- Thorntons Virgin Atlantic hamper filled with over 3.5 kilos of chocolate and sweets plus a bottle of Champagne; or
- £150 wine voucher to spend on any wine and Champagne of your choice at Virgin Wines; and
- Travel by Eurostar to Lille, Paris, or Brussels for a weekend; or
- 2 Economy flights for the price of 1.
I can't think which gift Jules is going to go for
October 20, 2003
Talk & Swallow
Well, having had a long chat with the Speech Therapist today I understand more what's being done, and reasons as to why she's drinking one minute, and slushing the next.
We've also got a good idea on diet and things she can do too (click away for more).
The post-op stroke has affected her swallow muscle control. As a result if things are too runny they'll pass down her throat without her noticing what's going on, and so mean she'll end up coughing, and eventually get a chest infection.
Also, her energy levels are quite low, which is affecting her swallowing. She's not got the energy to chew a lot, and so will end up swallowing larger bites and choking. Hence it's better to eat puried foods until her energy levels are back up and she's able to chew for longer.
Her understanding is good, when not too much information is presented. Complex verbal info, and reading seem difficult. She's able to understand language very well, but concentrates on the important words. As with the swallowing this might be affected by her energy levels too. The impairment is order based, i.e. things don't necessarily come out as they should, e.g. vowel sounds. They get muddled up between the brain and mouth. The brain is slowly relearning what is what. Different parts will take over the damaged bit, the therapy aiding it on it's way.
Things To Do
- Simple books, e.g. Mr Men, so they'll be going down next time I'm there
- Read magazines and newspapers to her, both as something to do, and as an aid to her understanding of language and speech.
- Gentle correction to what she's saying, rather than complete correction, so she's getting a chance to correct herself rather than listen to someone tell her what she should've said.
Things To Eat
- Light sponge cakes, but nothing too dry. Cake and custard would be a good one
- Stews and curries, but slowly cooked so that the meat is extremely soft
- Fruit smoothies, milkshakes, ice creams
- Anything mashed up, but no large lumpy bits, it needs to be soft
October 19, 2003
Jules Out and About
We got down there today and found Jules sitting out on a chair, as she has been doing now for quite a few weeks. However, she hasn't been jumping back into bed, with assistance from a nurse, it normally taking the hoist to do this.
So, things are slowly kicking in it would seem. I'm chatting with the Speech Therapist on Monday, so more news to feedback on that front.
Pics in the extended bit
Jules and Laura having a sister hug whilst she's out in the chair.
Just in case anyone's forgotten, her other trademark signal is still in use, regularly waving off the nursing staff post-medication.
Smiling away, Jules seems happier, probably due to her pampering session earlier (shower, hairwash, manicure... )
Last Nights Performance
Well, Saturday night was Nig's last night in Stevenage. And a last night wouldn't be a last night without a final performance. Sooooo, a band of merry men banded together and took him on a journey thro' sight and sound.... Prepare to enter...
Start the night as you mean to go on, with some draft Buddies
Nig, hiding in the shadows, having been acosted too many times to count by a string of Southern bew-dees
Another strange character lurking in the shadows, preying on the unsuspecting women of ol' Stevenage Town
Once someone had realised I'd taken a pic, I was promptly flattened
October 18, 2003
I Love You Lots
After Wednesday's phonecall I thought better than to try and ring Jules , as I always seem to catch her at inopportune moments. But I was tempted to call, given tonight's visit being knocked for six after the changing of my windscreen took a little longer than planned (and the old one broke, "It did it so easily, that's weird", says Nig).
So when the phone rang I didn't expect Jules to be on the other end, saying, "I love you lots, miss you".
I love you too me darlin'
October 17, 2003
Sick Yet Again
Jules ' been sick again, something not settling in her tum properly. So, as a precaution and to help with fluids and medication, they've put the feed tube back up her nose. And she's none the too happy about it
Nig came down with me again, doing the London thing, shopping for clothes, eating, drinking, and Hamley's. He said he can seen she's perked up again after earlier in the week. And I'm sure her cheeks and face, sickness allowing, look much more colourful
As a few of you know, things being what they've been the last few weeks, I've also had the panic of not knowing where Spitfire's been for days on end. Word's with the neighbours, and eyeout's being kept.
So imagine the surprise this morning when we discover he's developed his "cat burgular" technique. (click away for more)
It would appear he's into "breaking and entering" these days
October 16, 2003
Feeling Sicky Again
Her younger brother, Chris, popped to see Jules tonight. And she's still all smiles and happiness. A bit under the weather, seems a tummy bug's causing a bit of sickness. But nothing that anyone needs worry about.
October 15, 2003
Sorry, I'm Busy
Having not gone down to see Jules tonight (Stu & Lisa, Maria & Carl, Lee & Nicky went instead) I thought I'd give her a ring. Not much chance of a conversation tho', no sooner had it started ringing it was answered with a voice announcing, "Sorry, busy eating chocolate moouse", before the receiver was quickly clicked.
Hopefully she'll be finished in time for me to talk to her later!
October 14, 2003
Jules was in a good mood tonight, laughing so hard at one point that her nose medicine drip starting dripping.
We even had a little bit of a boogie with the radio on (click away for more)
"Please stop singing Al"
October 13, 2003
The Rehab Assessment
Off to Queens Square today and the National Hospital for Neurology & Neurosurgery
Their assessment was that Jules needs a more supportive rehab, as their treatment is very intensive and will tire her out very quickly. So, off to bang on the doors of Northwick Park
October 11, 2003
Moving On Up!
Popped down today with my mum and her boyfriend to see Jules . And her left leg is definately moving
The nurse caring for Jules has cleaned her nails, and after being requested to bring in the nail file and clear nail varnish, she's set to this evening and given them a coat.
The Deletetheweb community is expanding further. And a nice set of postings for the days of the week.
That sounds about right, don't it?
Whilst waiting for the Friday night hangover to disappear before I go into work, I've been trawling thro another raft of emailed links from everyone out there - thanks again guys n gals
Cancer.gov - What You Need To Know About™ Brain Tumors
Treatments By Brain Tumor Type - Meningioma - Note this is a US site.
PubMed Central Home - U.S. National Library of Medicine's digital archive.
PubMed - Search for meningioma
U.S. National Library of Medicine
October 10, 2003
We had, (and I hate to use the description, but), a David Blane moment tonight. As the nurse caring for Jules was sorting out her bed position she said, "Now, come on, get those legs straight", and before our eyes Jules moved BOTH legs and laid them out flat on the bed
Now, we've come to terms with the lack of progress and movement in the left side, but last night a light lit somewhere down this tunnel of life we've been walking, and has been shining ever since Lets hope there's a few more surprises in store as the days and weeks tick by
October 9, 2003
If it wasn't for this guy things would be a lot more difficult.
Off To Queens Square!
Jules is off to the UCL Hospital, Queens Square, London on Monday to meet the staff and have a look around their facility. We're allowed to go down with her, so it's a day off work and an early start to get us down there.
More when we know what's what, and hopefully when Jules will be moving there.
Jules has lost her job due to ill health, the decision of the board hearing just being announced to me on the 'phone.
What's nice is that Jules boss is going to look into the benefits and process that we need to follow from this point. Something which, if you knew what Jules went thro' at NHDC, wouldn't have happened there now, would it?
As well as the stuff we've found on novel therapies, which Jules consultant is looking into further, there's another link worth looking into:
Dove Clinic for Integrated Medicine - alternative and complementary treatments for life threatening illnesses.
I Know It's Late...
but I just can't seem to sleep...
Jules has a tumour that makes her 1 in 100.
Jules is to me, 1 in a million.
If anyone's got a miracle going spare, we'd sure appreciate it right now.
October 8, 2003
Chat with the Consultant
Had another chat with the consultant tonight, more for the benefit of her Uncle, Tony, and her brother, Stuart. Clarify a few points from last week, discuss the treatments we've discovered, and understand Jules recovery and condition post-rehab.
It look's extremely likely that her condition as it stands will not improve dramatically through rehab. In fact the rehabilitation process will be more toward getting her to cope with the left side paralysis, speech, and swallowing problems than actually getting her over it.
Oh, and to top it all off my car broke down on the way home. Thank God I took out AA cover this year. If only everything in life was as reliable...
October 7, 2003
Links on the 2 agents that seem to appear in most articles I've read so far:
Understanding Hydroxyurea, its uses and side effects
Google Search for Hydroxyurea
RU486 (mifepristone): mechanisms of action and clinical uses
Google Search for RU486 Mifepristone
Looking into it, RU486, the abortion pill apparently, sounds like a nasty piece of work.
October 6, 2003
Most Popular Page
Fiddling with the stuff in the background of this site, and this is the most viewed page:
Glad to see that people are reading
Thanks for all the emails, help, links, etc...
Royal Free Specific
DRESDEN ASSISTANCE FUND IN CONNECTION WITH THE ROYAL FREE HOSPITAL
FRIENDS OF THE ROYAL FREE HOSPITAL
SPECIAL TRUSTEES FOR THE ROYAL FREE HOSPITAL CHARITY
UK Brain Tumour Society
Give Hope - Brain Tumour Support
Brain and Spinal Cord Tumours On-line Directory - CancerIndex
ROTARY CLUB OF STEVENAGE CHARITABLE TRUST
SHEPHALL RELIEF IN NEED CHARITY
THE STEVENAGE COMMUNITY TRUST
[Taken from 2 May entry]
So it's a meningothelial meningioma
· malignant due to transitional pattern
· nuclear atypia
· brain invasion
(progesterone receptor + MIB-1 > 10%)
Articles [UPDATED] on explaining what a meningothelial meningioma is and case studies re:Possible cures I've found here:
Meningiomas: Benign by Histology, Malignant by Location
New Approaches for the Treatment of Refactory Meningiomas
Clinical Trial Imatinib Mesylate in Treating Patients With Recurrent Malignant Glioma or Meningioma
Management of Cranial and Spinal Meningiomas
ABSTRACT - Hormonal steroid receptors in intracranial tumours and their relevance in hormone therapy
Long-term prognosis for atypical and malignant meningiomas: a study of 71 surgical cases
research into malignant aggressive meningioma meningothelial
meningothelial meningioma MIB-1
Useful link, well, certainly over this weekend just gone. Cheers Carl
October 5, 2003
Well, after a weekend with the bruv's I'm a little more happy about life. Cryptic, I know, but for those unaware, I apologise, and ask you please email me and I'll let you know, if I haven't already.
As to what to do, I'll be trawling thro' all the entries and posting up those links. So if you've anything to add, please use the comments to add them.
Now, let's all get to it
October 2, 2003
October 1, 2003
We're There After 10 Years Wait!
Up The Tigers
Got Your Number!
Jules is now connected to the communication highway bedside once more. I had a very short conversation last night, made difficult by the fact she was in the middle of something else.
If anyone wants to call her direct, let me know, but bear in mind it's 39p a minute off peak, 49p all other times costs from mobile networks may vary.
September 29, 2003
No News Is Good News?
Didn't get chance to chat with the registrar tonight, but the consultant surgeon wants to have a word on Wednesday instead. Good sign or bad?
Jules on the other hand was out of bed again tonight, and Stu took her down to the cafe. In high spirits, although some of her conversation was a little outspoken shall we say
Oh, something tickled her, and she laughed tonight, for the first time since the op I believe, HUGE raucous bellowing laughter that had her in tears. Good tears, happy tears, something I've been waiting on for weeks
More Brainy Links
Some more places with info that's quite interesting:
- Traumatic Brain Injury Resource Guide
- Traumatic Brain Injury Resource Guide - Brain Functions and Map
- Traumatic Brain Injury Resource Guide - Clickable Brain Map
- Traumatic Brain Injury Resource Guide - Frontal Lobes
- Traumatic Brain Injury Resource Guide - Frontal Lobes and Language Compensation
September 28, 2003
The Great Escape!
Under cover of bed sheets and dressing gown, one Miss J Page tonight escaped the ward of the Royal Free Hospital. She was seen wheeling toward's the lifts at considerable speed
More in the extended bit.
Once out the ward, Jules settled down and shouted her order to her Uncle Laurie, "Mine's a Smirnoff"
But, despite countless complaints, Jules settles for a cool, refreshing bottle of Coke.
Well, it wouldn't be a photoshoot of my better half without the customary "salute"
Fingers crossed the next time we take some piccies it'll be in Stevenage
I'm going to miss it
I'm going to miss the standing around waiting for a train at Kings Cross. Don't get me wrong, it's frustrating as invariably you just miss a train as you get there. But the announcements make up for it all.
In the old days, you knew what to expect, there was rules on what would and could be said, an unwritten law... "The next train..", "Passengers awaiting the 9 o'clock...." etc... Well, things have changed, and for the better I believe. On several occasions I've heard the announcements take a very different tone:
"For all the passengers waiting on platform 8 for the 21:00 service to Newcastle, you really aren't getting it, are you? I'm not going to announce the departing platform until you're all standing on the concourse area, as instructed."
"For passengers waiting on the next WAGN service, I've no real idea on what's happening, so please keep an eye on the concourse departure boards, and as soon as we know what's going on, we'll let you know."
A human announcer, I just hope he wasn't on his last week, and is still cheering up some of us more relaxed travellers
Pop-Ups - ARGHHH!!!
I've been surfing this weekend, adding a few bits and bobs to this and other sites. And it's getting more, and more annoying as my machine, firewalled as it is, grinds to a halt as various places kick off pop-ups. I've gotten close to putting my fist thro' the screen today
Oh why can't IE be like this - Mozilla Firebird 0.6.1 ?
September 27, 2003
We're Coming Home!
Went for a little drink last night, so that's the reason for the lack of the usual latenight update. But good news needs a celebration, does it not
Jules is progressing daily now, she seems to be more and more relaxed each day. Even the "slap-ometer" shows a decline in physical abuse
So, fingers crossed everybody, and lets all hope in a week or so she'll be five minutes down the road, and not 2 hours
September 26, 2003
Addicted To Love
There's many things Jules gives me a slap for, and at the moment, just being by her side seems enough
But there's a video, every once and a while, shown on VH-1 which gets me the look, the slap, and the tv switched off. Sadly, Robert Palmer has gone, but thankfully the music, and that video live on
"Care for a Jellybaby?"
News that Doctor Who's coming back. I remember as a kid being allowed to stay up and watch, only to have nightmares and never get any sleep. Rewatching on UK Gold it does show it's age, the effects and costumes being terrible in this modern age.
I wonder what the new stuff will be like, and will it be as scary as I remember
September 25, 2003
Jules' Little Boy
It's 2 years today that we had to let Toby go, suffering from throat cancer. Jules was talking only last night about him, Spitfire the cat, and how messy the house was.
Hard to believe it's been that long ago. It only seems like yesterday we moved into the house, and had the pair of them at each others throats, hissing and barking
September 24, 2003
What Absolute Idiots!
Jules is out of High Dependency and in a side ward, which should be good news, right?
Well, answer me this (post a comment PLEASE!). Is it, or is it not, a well known fact that Robinsons Barley Water is a drink you dilute with water? Only it appears the numb-skulls that are employed to "care" for my better half either can't read, or have never made a diluted fruit drink of any kind.
Oh, and how many times do you have to point out that a catheter bag has a tap on it that needs to be closed PROPERLY. I know for a fact that Jules really loves sitting in a pool of piss NOT
And finally, it fails me, but if the physio advises she needs pillows in certain positions, does that mean you can leave her in what ever position you want? The speech therapist says, "No straws", because she might choke, but you can let her drink, unsupervised, with one?
I really do give up....
Came in the post today, a card from the Agoonoree Gang
Would've been there in person this year, only things didn't work out quite as planned. Will be back in force next year tho'. Both looking forward to it already
September 22, 2003
Got a really good bit of news when I got home tonight. Looks like Jules has lost her job.
I suppose it's been on the cards, she's been off for over 6 months. But you kinda ignore it in the hope it'll go away. I mean, it's not like we've enough to worry about...
BTW No-one's to tell her, and I mean NO ONE
The Yorkshire Tourist Board "Oscars" have been announced, and 'Ull is up't there with the best () having won an award for the fish tank - The Deep.
Full story - Winners announced in tourism 'Oscars'
And for those wondering what's happening back herm, I've added the link to the BBC's Humber News, (and, yes, I know it's East Yorks and North Lincs really )
As everyone's asking, and I'm curious, here's a list of places I've found so far:
Stroke Information Sites - Lots of links and info.
The Whole Brain Atlas - lots of amazing MRI/CT scans of the brain!
BUPA - Stroke - symptoms, risk factors and information.
BBCi Health - The Stroke Guide - What are the Effects of a Stroke
It's arrived, the new Sting album, and what do we think? Well, apart from the fact it's released today, or next week, or 13 Oct (Amazon), it's another Sting song chest. Listening to it at work, a few catchy ones, quite a change from the last one. And a cracking Intercity 125 effect on "Never Coming Home" if you've stereo
Stu and Lisa are off to see Jules tonight, so I've a night in. Another listen me thinks!
September 21, 2003
A Sloe Day!
Started the day proper having my face and hands ripped apart picking Sloe's for my Sloe Gin, mmmmm , and finished it off having my face slapped and hands crushed in a hospital.
Why do I do it?
Simple. Both things turn out sweet once you've left them to stew a little
September 20, 2003
First Lads Night Out In Ages!
What a corker
Feel as rough as old boots this morning tho
September 19, 2003
After last nights shouting match, a long week learning how the company's new planning tool works, and given I'm as knackered as anything, I've managed another night off. Drinks, curry, the works! Just need to ring round and arrange things.
An afternoon playing with Primavera and then home. The clock's ticking
September 18, 2003
Oh! One More Thing..
I know from talking to Jonathan that TV ain't what it used to be. But overhearing a conversation on the train about how this guy's company has been commissioned to do a 3rd series for Channel 4 in 2004, I had to flick away at the TV remote once I'd gotten home to find it.
Jules is finding the physio and hospital life tiring. And it's obviously getting her down. And I'm the one she's taking it out on. Slapping, hitting, swearing, the list of abuse is endless.
So, after being told for the 4th time tonight to "F&^% off", I did.
Not to worry tho', as after a couple of minutes away she'd calmed down, apologised, and explained, "Stressed", giving me a hug, as best she can
What's interesting is that her speech is slowly getting clearer and understandable. And yet the phrases she has said clearly and precisely from day one are:
Shut the F&^% up
And whilst I remember, she's definately NOT pregnant. She's now only 8 and half stone in weight, so her concern about getting fat has been put to bed too.
September 17, 2003
Jules had her assessment for the rehab place this afternoon. It looks like they'll leave it at least a week before moving her. She's still on medication and they want to wait until she's off it before moving her out of the Royal Free.
She'll hopefully be off to North West London Hospitals NHS Trust Regional Rehabilitation Unit in the next couple of weeks to start the intensive rehab that she needs.
A Night Off
I've got my pass-out off Jules last night, so Stu is off down there today in my place. I've got my orders tho', cleaning, washing, and tidying, so no relaxing for me I'm afraid
[Update]Instead, I'll sort out the weblog a bit more, reorganise the links, and add some stuff about rehab. Oh, and stumble across some pics of friends
Trying to remember Jonathan's old URL, a quick search of Google found it, and this:
September 16, 2003
Off to Rehab!
Found out tonight that Jules will be getting assessed for transfer to a dedicated stroke rehab centre tomorrow afternoon. If all's okay she'll be moved from the Royal Free as soon as
She's really tired come the evenings still, but the ward sister was saying she's improving daily!
Fortunately Jules Uncle is giving me a lift down tonight. Otherwise I'd be having great fun getting down there...
What's really worrying is the fact it's the same company that is under investigation for the Potters Bar accident, another case of faulty points
September 15, 2003
Well, got down there tonight and Jules is sat up, out of bed, in the wheelchair I asked if she was ready for her escape, but just got a slap on the forehead with the comment, "Idiot".
Turns out today's been a big physiotherapy session, quite tiring. Jules was complaining of an aching back, neck and arm. But it's got to be expected, given she's been laying in bed on and off for nearly 3 weeks now. She can also move her left arm, but it's really hurting her neck and shoulder. As we said, work at it and it'll get easier
She's also eating again, the sickness sorted with various antibiotics. But having smelt tonights delights (Purred Cod Mornay ) I think it won't be long before she's ill again.
September 14, 2003
Back on Sludge
Jules is off normal mashed food and back on the sludge bags. She's been sick again, so the doc's are keeping her off normal food whilst doing some tests. It's probably an infection, but we'll know more tomorrow. In the meantime the strawberry yoghurts are on hold, and the Coke's back on ice
Goon But Not Forgotten
Sorting out more "junk" (I like to think of it as part of the UK's historic archive, Jules has other views on this ) I've come across all my old Goon Show recordings. Playing a few back has me in stitches. Reminds me of the sad loss last year, and the postings on a former Sanderson Inc product, ItLikesYou - Goons gone.
September 13, 2003
Jules has been sick today. Not sure why, guessing it's either something she's eaten or another infection. As she pointed out, sods law and her run of luck, it'll be another infection of some sort.
Also, the weekend staff are a little short, which is making her stay less than appealing. That and the fact they forgot to close off the catheter bag. Suffice to say, I've a LOT of washing to do tomorrow
Whilst I know it's Autumn, you never hear of Autumn Cleaning, now, do you!
Sorting out the sites and cleaning up a little, I've drifted off into web-land and found this little comment about the site's host/creator -
Makes me wonder how many more are lurking out there, talked into creating a blog by JJS?
September 12, 2003
And another thing
Bearing no relevance to Jules , but what is it with people? It's in the extended bit if you want a read
Tonight several things happened to slow my journey in and out of London. A bomb alert at Kings Cross underground meant a brisk walk to a packed Euston to struggle thro' the crowds and eventually get a tube. Hour and half to do what is normally 3/4 hour. But what tickled me was people's comments:
"They're always closing the tube for no reason",
"Cuh, they could've picked a better time",
"Sorry love, gonna be late home coz the bloody tube's closed..."
"Now, where the hell did I leave my bag....."
I'd have loved to hear their comments had it been true, and, as we all stood on the concourse, a massive explosion had erupted thro' the station. Some people just don't know when they've got it good, do they?
And as for getting home. What's with this Friday rule? Your ticket has to have the exact train journey, time, destination, whatever, on it? Ended up getting the slow train back, which was pleasurable in a way. The express, the one I was chucked off, got stuck behind us as we were late leaving. Of course it'd have been different in the days of a managed rail network, but hey, who am I to moan
Don't know what's up this evening, but Jules is one grumpy so-and-so. I'd only been there 10 minutes and already had my marching orders, "Chat about, no, go home please"
Look's like today's been a bad one. Aches and pains, jippy tummy, and Matron refusing to let her have another pudding. Jules didn't even want her Coke, so things must be bad.
Anyho's, it's Friday, it's fish and chips night, and I'm off to eat
September 11, 2003
Sit Up And Pay Attention
Been up tonight to see Jules myself, feeling much better. Still got an annoying cough, but, hey, what have I to complain about!
Jules is sitting up straight in bed now, and is in full flow. The pen and pad have been binned, and she's talking away, fairly understandably, telling me about the week and what's been happening. She's even had her hair washed, which has made a massive difference to her appearance.
Confusing bit is that she's convinced she's pregnant, or at least has managed to convince the nursing staff. Tests and quite serious chats abound so we'll have to wait and see what the results are. But I'm pretty sure it's more to do with her getting an answer as to whether she can have kids as a result of all the surgery and treatment, rather than actually having a kiddy now.
Otherwise she's feeding herself, drinking Coke like it's going out of fashion, and calling me such endearing things as, "Shit head", and "Deaf Shit" to name but a few
Hopefully in the next couple of days she'll be moved out of High Dependency and into the side wards. Still no idea on when she'll be out, but the physio is progressing well. She's been sat out in a chair, and today was trying to stand up and move about under her own steam. There's still no big movement in the left arm and leg, but the nurses are saying that they've seen more movement as each day passes
Well, the domination of the universe continues....
Feeling much better today, thanks no doubt to my sudden mechanical growth Jules is feeling better too, ehem. Will see how things have developed when we get up there tonight.
We are blog. You will be trivialised. Journalism is futile.
September 10, 2003
Jules has been out of bed and sitting in a chair for a while today. Also the nurse says her left arm and leg are moving ever so slightly. She's also feeding herself, and drinking tea, albet with the thickener "sludge" stuff.
Still talking and staying up all night. And physio is tiring her out.
But what she means by saying, "Pregnant" and slapping her tummy, hmmm, weird?!
My cold's getting better, should be back to the grind tomorrow
September 9, 2003
As last time - Owwhhhh - I've come down with a monster cold AGAIN
So, bed, Lemsips, and Strepsils.
Oh, Jules is doing great guns. Been sitting in a chair yesterday, and talking all night with the other patients in the ward. Has about a week left on the antibiotics for the Meningitis. No dates on when she'll be moving onto the normal part of the ward, but things are improving daily. Jules doesn't think the physio is doing anything, but we're all telling her to be more positive.
September 5, 2003
Having had the doors and windows open most of the day, doing washing, cleaning, whatever, a number of flies have popped in, as they do.
Well, "someone" thinks this is great, running around like a animal possessed.
I'm waiting for something to fall and break.....
Jon, just for info, we've lost NTL phones today. Seems the accounts have been "deleted"
September 4, 2003
Happy, chirpy, full-of-beans, can't think of what else to describe Jules state tonight. She's loads better now the staff rotation's kicked in. Her speech is improving daily, and she's not used the pen and pad at all today. She's bossing me around, as always, telling me what needs doing at home too
Still no idea on a home date, but the physio's continuing ("Ou-ch"), and the oral therapist has uped her fluid and food to thick drinks and 15 spoons of puried food. Jules is still itching to drink Coke and hot chocolate, even asking me last night to sneak one in when no-one's looking.
September 3, 2003
Wash Day Blues
All Jules pyjama's are coated in food - how are they feeding her, it looks from the stains they're just throwing it in the general direction of her face?!
Anyho's, they need washing, so Stu's brought them home for a good wash.
She's had the staples out now, and is a little more perky than last night, but "Grumpy" is still looking after her, so Jules is still a little depressed.
I've had the night off, sorting out the house, having a soak, and relaxing from the commuting I've been doing. I'll pop and see her tomorrow night.
September 2, 2003
Jules is a bit depressed. The nurse looking after her is "grumpy", she has a canular in her right hand which hurts, and hospital food is "windy pop's".
I think things are getting to her. It's been nearly 2 weeks since the op and she's not home yet. It's gonna be a long while yet, as the therapy needs time to kick in.
"Go home today please" was what she told me
September 1, 2003
Give Me, Ugh, SUGAR!
Well, it turns out today's been a hard one, lots of therapy, so Jules was a little wacked when I got there tonight. But more seriously, although yesterday "Sexy Pat" said it was probably okay for her to start enjoying the fruiter side of oral refreshment, the therapist has slapped down complete drinking ban
"Bugger" were her exact words, shortly followed by, "Shhh, socks, slippers, dressing gown... PUB!"
August 31, 2003
She's Got Meningitis!
As Jules said tonight, it's just another thing to add to the list. It's not the serious strain, as it's affecting her meninges, not her blood, and isn't contagious. Phew! But it does explain her rather "rambling" nature the past few days.
Some info on Meningitis:
August 30, 2003
Jules is chatting away, seems soooo much more with it than the last few nights. Still has swelling and possible infection, but she's less delirious than the last couple of nights. And she said "Mum". She also seems to have fallen in love with strawberry yoghurt and Patrick, the guy who feed's her it, hmmmm.
She'll be eating normal food, albet mashed up, tomorrow, so things are improving once more.
I've my orders, a comprehensive shopping list, so I'm off to do that tomorrow.
Spent today doing everything around the house, clean the car, and sort it out.
Now bored, so have played a bit with the weblog. What ya think of the colours?
(BTW if nothing's changed, try ctrl&refresh)
August 29, 2003
A Meaningless Stream...
Jules is talking no end now, but it's all a mess. Something about Caroline being shit (?), Thursday morning before how much, socks and slippers, and repeating most things you say.
She's also talking in French and Italian. Oh, and a friend's taught her a rude word too.
Confused? Scared shitless more like
August 28, 2003
Jules kept writing:
I don't know, we don't know. Until things move on no-one can say what damage is permanent, and what will go with time.
The doc's are saying it'll be upto 18 months before Jules is fully recovered.
Guess that's 2004 out the window then.
Oh, and this didn't help tonight either - Power cut causes chaos - have just walked in, having spent another night on "Random Rail", the new franchise holders of WAGN.
Or at least, last time she would've been.
August 27, 2003
My First Words...
Jules is now slowly starting to speak, mostly one off words, and mumbles. But tonight she said a complete sentence:
"Life's a bastard!"
Not exactly what I was expecting, but a good sign none the less.
August 26, 2003
I've just finished another night on the 'phones. Jules is giving the thumbs up to all your messages of support, and hopefully in a few days will be able to give me some words to put up, from the horses mouth as they say!
Big hugs and kisses from us both!
The Scientific Bit
A bit of a scare this morning, but nothing to worry about, a drain has been plugged in to Jules head to relieve any unnecessary pressure. Job done.
But, and there's always a but...
The registrar and consultant have looked at the CT scan in detail and explained what they think has happened, and the definates and maybe's of Jules ' condition. Click away.
Possible sore throat, and as the day's go by her voice is coming back. She can say singular words, but the effort is straining her. Most communication is via a pad and pen, which will be a useful record for her when she recovers further.
Can't Stop Peeing
As a result of the removal of the pituitary stalk, Jules is suffering from diabetes insipidus. The disruption of the pituitary gland has caused it to stop producing a substance called ADH (anti-diuretic hormone). ADH is one of many hormones produced by the pituitary gland and causes the kidneys to hold on to free water. When ADH is not produced, the kidneys make abundant dilute urine. If it's not monitored closely her serum sodium will rise and her mental status may be affected more than she normally is. Once she's out of hospital a nasal spray will be the provider of ADH.
No Leftside Movement
After the CT scan today it's now certain that Jules has brain damage. How much, how permanent, is an unknown. But it's likely from the lack of movement down her left side that it's something to do with her motor control for the left. Only time and physio will tell.
Jules is going to be on hormones and ADH replacement for the rest of her life. Returning to work I can't see happening before next Easter, if at all. The brain damage will be apparent in the coming weeks as she recovers from the op. Life is going to be hard, but being the positive fighter she is, it's going to take a lot more to knock her back.
A Little Drowzy
The hospital have rung to say Jules has been a little drowzy over night. A CT scan is being done, and they'd like us to be down as soon as possible to chat to the consultant.
Nothing serious I don't think, but means another day out the office.
August 25, 2003
Jules ' throat is getting better, and she's able to open her mouth more. To the point yesterday that she can now say some words, although still needs her pen and pad to write things out.
Coz Eee's down it was a short visit so we could get down the pub. Jules was none the too happy about this, screaming, "Smirnoff, Bacardi Breezer, Pub!!", and nearly half way out the bed, asking for her slippers and dressing gown.
As before I think she needs to take her time recovering, and that means in bed, and not down the pub. Besides, the drip lines wouldn't reach
August 24, 2003
...and Another Night
Having got back from London it was time to let the hair down and Ian to cheer me up with some Old Town Action!
Drinks, pool, and clubbin' all on order! Pics of the night in the extended bit, click away.
Ian "playing" pool.
Ian's "Pint Glass in Gob" party trick.
More drinks please (although not tooo sure what they are?)
I'm not far behind...
... Chris is just a smilin' wreck.
... and now Ian's face is melting, a-la Coldplay vid stylie...
Oh, One Other Thing...
All night she was spelling out by hand:
2 - 5 w - e - d
Any clues what she's on about?
We went to see Jules last night, having caught up on sleep lost from Thursday and Friday.
She's still not talking. Her left side is completely frozen, and she's unable to move anything that side. Communication is simple, either clicking fingers, thumbs up, and as of last night, notepad and pen. She has now opened her left eye fully, which is a good sign as it suggests movement is slowly returning to that side of the body. She's not eating, everything being given by drip still as she's unable to swallow or open her mouth properly. A side effect is she's passing some very large amounts of wind, much to her amusement!
Words and phrases are back to front, i.e. she writes things like Yoda, e.g., "Much whiring is ear my". Oh, and despite much grunting arguing, I was born in 2001, which makes me a lot younger than I feel!
Frightening for me, she's nothing like the last time. But the doctors assure us that there's nothing to worry about and she'll slowly recover in the next few weeks.
Fingers soooo tightly crossed it hurts.
August 23, 2003
Time To Eat
Ian and I have just gotten back from a loong day in London seeing Jules. And all I want to do is eat and have a drink.
So, a HUGE quantity of pizza is on order, the Cola's freezing away merrily, and "Harry Enfield & Chums" has just started on UK Gold.
I'll post full details tomorrow, there's too much floating around in my head at the mo'.
Down London Town
Ian's untimely arrival yesterday mean't a change of plan.
So, we're off to London early to see the sights and buy some cheap books!
Pics of the adventure are in the extended bit, so click away.
Chillin' in Tottenham Court Road
Catching up on "World Domination - A Beginners Guide"
Ian's not massive, he's Belsize!
Ian looses his head on the train home...
August 22, 2003
Time for Bed
Jules mum and younger brother have just got back from visiting this evening. Good news is Jules is now opening her left eye and moving her arm and leg. So that's a good sign that things aren't as serious as could've been.
Ian and I are off to paint the town tomorrow, and pop in and surprise her in the afternoon.
Time for bed now tho!
Sleeping it all off, half way thro' a can, the phone rings,
"Alright Al, what ya upto?"
It's my younger bro, Ian, with a 12 pack of Carlsberg, which, would've been disappointing given he normally frequents the streets of Hull. Except he's ringing me from Stevenage station
Better go and pick him up then
Brand New Day
Well, having had a looooong night watching and waiting, it's time for Jules to move from ITU back up to the ward. As this takes a bit of time, it's a good point to pop out and get some fresh air. So off to Starbucks.
The Good, The Bad, & The Ugly
Well, it's all over once more, save the singing. So how did it go:
Jules has no more tumour around the optic nerves and peturitary gland, hooray
It would appear that she's had a stroke, as all movement in the left side of her body has gone. It's hard to say if it's permanent as there were no signs during the operation that it had happened, which is good as this suggests its a more temporary thing rather than a full-on stroke. The surgeon's are saying it's a case of wait and see, so fingers crossed.
If last time was, "10 rounds with Mike Tyson", then this time is KO.
August 21, 2003
6 1/2 Hours Later...
She's out of theatre and into recovery. Much quieter than last time, so the nursing staff are having an easy time of it. But out and awake, that's what's important, ain't it
Ready For Action!
Now, you must understand this was Jules idea, so I have no responsibility for the pics!
The surgical stockings are not the top fashion, but Jules seems to think they'll make it soon!
August 20, 2003
Pizza Express Please!
Having rushed down for 6pm we've not had chance to grab a bite. And Jules was late for hospital dinners.
Checked in and settled, she asks, "Is it okay if I pop down the pub with my family for a bite?" expecting the answer to be no....
The Ward Sister replies, "Yeap, no worries, just keep off the alcohol..."
WOW Quick, lets get off before Sister changes her mind.
The family sit and wait for the food!
Inside in the warmth, Jules demolishes one Ham & Cheese, hold the olives...
We've had our fill, now lets get her back before anyone notices she's AWOL