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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
October 31, 2003
Night Off
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
Posted by alan at 4:12 PM
October 30, 2003
What You Listenin' Ta?
Well, another album from the hometown band, and about time too.
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
Posted by alan at 1:03 PM
October 29, 2003
Getting Nearer The Exit
Jules ">
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
Posted by alan at 10:57 PM
October 28, 2003
Pooltime!
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
Posted by alan at 11:36 PM
October 27, 2003
No Insurance!
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.
Posted by alan at 11:08 PM
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 friend, Maria, filling Jules in on the latest goss.
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
Posted by alan at 11:46 PM
October 25, 2003
Perky
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.
Chris: "You've got a bit on your chin, Jules "
Jules : "Cheers bruv, just here is it?"
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
Posted by alan at 9:04 PM
Wooooohoooooo
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
Posted by alan at 12:25 PM
October 24, 2003
Love Muncher
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
Posted by alan at 11:14 PM
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
Posted by alan at 6:21 PM
October 23, 2003
No go!
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
Posted by alan at 11:37 PM
October 22, 2003
Supportive Links
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
Posted by alan at 11:23 PM
One Option
This is one of the places we're looking into:
The Chiron Clinic -bio-energetic treatments
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.
Posted by alan at 11:01 PM
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
Posted by alan at 10:00 PM
Cough! Urgh!
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
Posted by alan at 12:58 PM
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
Posted by alan at 12:48 PM
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).
Swallowing
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.
Communication
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
Posted by alan at 12:54 PM
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... )
Posted by alan at 10:57 PM
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
Posted by alan at 10:16 AM
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'
Posted by alan at 7:21 PM
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
Posted by alan at 11:44 PM
Spitfire AWOL
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
Posted by alan at 11:37 AM
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.
Me? Off round Stotfold for a few jars, and games of pool with me brother Nige, and an old mate, Gareth. Then a curry at India Lodge.
Posted by alan at 7:07 PM
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!
Posted by alan at 6:46 PM
October 14, 2003
Laughing
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)
Lets rock
"Please stop singing Al"
Posted by alan at 10:44 PM
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
Posted by alan at 10:43 PM
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.
So, Jules is looking all smart and tidy, and making noticable progress on the movement front. Time for bed, catch up on some rest, as Jules quite rightly ordered me to do
Posted by alan at 8:51 PM
Another Addition
The Deletetheweb community is expanding further. And a nice set of postings for the days of the week.
I'm a Tuesday child
Jules is a Monday child
That sounds about right, don't it?
Posted by alan at 9:39 AM
More Links
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
Posted by alan at 8:21 AM
October 10, 2003
Shizam!
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
Posted by alan at 8:24 PM
October 9, 2003
MRI Recognition
If it wasn't for this guy things would be a lot more difficult.
Scan pioneer shares Nobel prize
Posted by alan at 11:18 PM
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.
Links:
University College London Hospitals NHS Trust
UCL Hospitals - Acute Brain Injury Service
Posted by alan at 4:00 PM
It's Official
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?
Posted by alan at 11:17 AM
Alternative Treatments
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.
Posted by alan at 10:04 AM
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.
Posted by alan at 3:05 AM
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...
Posted by alan at 11:53 PM
October 7, 2003
Chemotherapeutic Agents
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.
Posted by alan at 10:50 AM
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...
Posted by alan at 5:41 PM
Support
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
General
UK Brain Tumour Society
Give Hope - Brain Tumour Support
Brain and Spinal Cord Tumours On-line Directory - CancerIndex
Stevenage specific
ROTARY CLUB OF STEVENAGE CHARITABLE TRUST
SHEPHALL RELIEF IN NEED CHARITY
THE STEVENAGE COMMUNITY TRUST
Thanks Terri
Posted by alan at 5:03 PM
Reiterate
[Taken from 2 May entry]
So it's a meningothelial meningioma· malignant due to transitional pattern
· mitoses
· nuclear atypia
· necrosis
· 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
Google Searches
research into malignant aggressive meningioma meningothelial
meningothelial meningioma MIB-1
Posted by alan at 2:21 PM
Cheap Drinks
Useful link, well, certainly over this weekend just gone. Cheers Carl
Cheapest Beer in UK - Where and How Much
Posted by alan at 1:45 PM
October 5, 2003
Cheered Up!
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
Posted by alan at 11:27 PM
October 2, 2003
Posted by alan at 11:17 PM
October 1, 2003
We're There After 10 Years Wait!
After a decade of waiting, my home team, after years of struggle, have hit the top of the Third Division, after a home win against Swansea last night. Next stop, promotion
Up The Tigers
Posted by alan at 1:26 PM
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.
Posted by alan at 12:43 PM
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
Posted by alan at 10:38 PM
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
Posted by alan at 1:11 PM
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
Links
Brain Function and Pathology
Posted by alan at 10:41 PM
I'm going to miss it
Getting ready to make the journey down to London to see Jules , listening to Sting - Never Come Home, and the bit with the WHOOOSSH train noise gets me thinking.
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
Posted by alan at 3:07 PM
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 ?
Posted by alan at 12:21 PM
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
But more importantly, and fingers crossed time please, is that having discussed things with the registrar it looks promising that Jules will be able to come upto the Lister rehab unit in Stevenage
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
Posted by alan at 10:50 PM
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
Posted by alan at 1:43 PM
Doctor Who?
"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
Posted by alan at 1:35 PM
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
Posted by alan at 12:29 PM
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....
Posted by alan at 10:55 PM
Thanks Guys!
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
Posted by alan at 1:08 PM
September 22, 2003
Shit!
Got a really good bit of news when I got home tonight. Looks like Jules has lost her job.
SHIT 
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
Posted by alan at 8:25 PM
By heck!
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 )
Posted by alan at 1:51 PM
Stroke Info
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
Posted by alan at 1:44 PM
Sacred Love
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!
Posted by alan at 1:12 PM
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
Posted by alan at 10:49 PM
September 20, 2003
First Lads Night Out In Ages!
What a corker
Ended up popping over to Stotfold with an old mate, Gareth, and Jules younger brother Chris. A few Amstel, a curry (Cashi Chicken with Mushroom Pilau, mmmmm ), and collapse back at Gareth's pad
Feel as rough as old boots this morning tho
Posted by alan at 10:30 AM
September 19, 2003
Cool Off
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
Posted by alan at 12:55 PM
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.
The SalonNow, what the hell's that all about? What's even more worrying is finding that over 1.2 million have nothing better to do than watch it. OMG
Posted by alan at 11:52 PM
F&^% off
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:
F&^% off
Shut the F&^% up
B*~~*cks
Shithead
Deaf shit
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.
Posted by alan at 11:31 PM
September 17, 2003
The Assessment
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.
Posted by alan at 8:01 PM
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:
The Sanderson, in it's natural habitat, Guiness in hand, of course
Posted by alan at 1:32 PM
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!
Posted by alan at 11:29 PM
Ohhh Great
Fortunately Jules Uncle is giving me a lift down tonight. Otherwise I'd be having great fun getting down there...
BBC NEWS UK Faulty points derail train
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
Posted by alan at 1:59 PM
September 15, 2003
Sit Up!
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.
Posted by alan at 10:25 PM
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
Oh, and another outbreak of MRSA in the ward so it's gloves and aprons again No hugs 2nite, but Jules did manage to say, "Love u lots"
Posted by alan at 10:34 PM
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.
This and Fawlty Towers, the 2 comedy shows that'll have Jules grinning from ear to ear when she's home
Posted by alan at 12:40 PM
September 13, 2003
Sick
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
Posted by alan at 9:55 PM
Spring Clean
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 -
Your genial host (no, not me)
Makes me wonder how many more are lurking out there, talked into creating a blog by JJS?
Posted by alan at 3:02 PM
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
Posted by alan at 11:07 PM
Grumpy
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
Posted by alan at 9:41 PM
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
Posted by alan at 11:14 PM
Another Blog!
Well, the domination of the universe continues....
Assimilated
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.
Posted by alan at 11:58 AM
September 10, 2003
Sit Up!
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
Posted by alan at 9:00 PM
September 9, 2003
Owwhhh Again!
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.
Posted by alan at 8:33 PM
September 5, 2003
Bzzzzzz..... SMASH!
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.....
Posted by alan at 12:06 PM
Hello???!!!
Jon, just for info, we've lost NTL phones today. Seems the accounts have been "deleted"
Posted by alan at 9:47 AM
September 4, 2003
Big Grins
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.
Posted by alan at 10:47 PM
September 3, 2003
Wash Day Blues
All Jules pyjama's are coated in food