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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 | Comments (0) | TrackBack
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 | Comments (1) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (2) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (2) | TrackBack
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 | Comments (1) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (2) | TrackBack
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 | Comments (1) | TrackBack
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 | Comments (1) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (2) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (1) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (1) | TrackBack
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 | Comments (2) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
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 | Comments (0) | TrackBack
October 2, 2003
Posted by alan at 11:17 PM | Comments (0) | TrackBack
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 | Comments (2) | TrackBack
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 | Comments (0) | TrackBack