Jules' Weblog

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April 30, 2004

Another Great Night

Went and saw Jules earlier tonight, and ended up staying much longer than planned. She was really perky yet again, full of beans compared to earlier in the week. So I stayed a little longer.

Then down the New Town for Chris's birthday. A couple of pints then home for tea and a looong sleep before the family appear.

Pics of Jules in the extended bit

Jules has spurts of tiredness, where she'll just drift off, before jumping back awake again.

The chocolate teacakes get a full thumbs up

Chris lost his hat, Jules taking it and feeling rather swish no less

Jules is still able to drink, but not as much and as quickly. She also can't really hold the cup properly, and is needing a beanbag to rest her neck. Chris gave her a hand, and got the usual thanks - a slap on the face

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Day off!

Decided to have a day off, a chance for a ly-in, catch up on rest, and sort out the house before everyone descends on it tomorrow

Didn't realise just how much washing and cleaning there is to do. And then there's the weblog and email's to catch up on.

Off to see Jules later, then out with a few friends from work. It's someone's birthday, and I've promised not to say how old

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April 29, 2004

Night Out Drinking

Taking a night off, and a chance to mull over a very productive day at work. A couple of jars, then ajourn to Gareth's for whiskey and snacks

Jules was quite perky tonight, seemed to have a little more energy than of late, which really finished off the day

Anyway's, better get my arse in gear before it's too late.

Pics in the extended bit...

She seemed quite perky, but still drifted in and out of sleep.

The two finger salute, one finger being just too much

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April 28, 2004

Sick Again

I seem to be falling ill more and more recently. Not surprising I suppose, stressed out and spending a lot of time in a place full of unwell people means I'm statistically more likely to get something than would be otherwise. Coupled with my enlarged tonsols, and I'm a magnet for the ills of the world

So, today I've been sat at home, and I've not been over to see Jules in case something rubs off. Janet's not too well either. The nurses told us last night that Jules has been suffering with a chest infection, so maybe for once she's infected me with a cold, rather than me passing it on to her

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April 27, 2004

Quiet Tuesday

My second session with the family support counsellor went well, Im really feeling that a great weight is being lifted as I talk through things.

Jules was still very tired and quiet. Got some pics in the extended bit, as always

She's struggling to keep awake whilst eating, tending to doze off after a couple of chews.

But she's still aware enough to hear you saying things, or in this case the camera going off, to give you the finger

She's not smiling, again it seems too tiring and too much effort. Although tickling gets a slap, not as hard as normal, but a slap none the less.

They've now got a beanbag to support her neck, as the muscle on her left side is wasting away and Jules is struggling to keep her neck up straight.

It wasn't too long after medicine time that she dozed off, so I left her be and got off hom myself

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April 26, 2004

Urgh!

I don't know what it is about Monday's, but today was even worse than normal. An early start, and then an all day document review. This is where you all sit in a room for several hours producing large amounts of hot air, the resulting effect being the production of a document that you are all happy with. Then home, as it's night off. And I'm shattered

Anyway's, won't stay up any longer, need to be in before 7:30 tomorrow, which I know you think is impossible

Some pics from yesterday night in the extended bit...

Gareth, on challenging someone to an armwrestle, realising that some women are stronger than they look

Jules last night, still really tired and quiet. She didn't say much, and hardly opened her eye.

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April 25, 2004

Scrapyard

Woke up this morning suffering from the night before. Kareoke night at The Stag, so you can imagine it was a little on the wild side. Then a curry, and a few select whiskeys before falling asleep watching a film. This morning's been rough, and I'm not sure when I'll be in a fit state to face the day yet

Nigel's recovering downstairs, and we've decided not to waste the day. Already got the weekly shop in at ASDA, so once we're ready to face some lunch we'll hit the road and go over to the local scrappy for a wander and explore. Ian's after some bits for his latest catch, so we'll see what we can find. Then over the Hospice, see Jules , and then get Nige off back up to Hull in time for last orders at Pipe & Glass

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April 24, 2004

Many Vistors From Afar!

Some friends from back home came down today, having not heard or seen us for a few years. Quite a shock, given what has happened. You tend to think, "Well, I've not heard from them for a while, guess all's well". But it was great listening to the gossip and trials of camp last year Hopefully they're all coming down mid-May for a big night out. So if you're free and at a loose end, let me know and we'll all go out and have a drink for Jules

Off over to Stotfold as my brother's just appeared. Was alone in Hull and decided he'd be better off, "Alone" in Stevenage No doubt we'll be wrecked by 10, and asleep on Gareth's floor by 12

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April 23, 2004

Get Mum Down The Pub

We went over to see Jules last night, with Janet's friend Iris. Chris and Stu were off down the pub for their usual Thursday night out, so I decided to surprise Janet and drop in for a quick half

Some pics of last night, and visiting Jules , in the extended bit, as always

Jules , giving her best smile Her face is swelling because of the increasing steroids she's getting to combat the swelling in the brain and reduce the headaches. It can be worse some days, and better others. Yesterday was a bad day.

Jules getting on with taking her medicine, and that's no mean feat There's over 8 different tablets and 5 different fluids to be taken 2 or 3 times a day, and she's making light work of it

Janet seemed to have a real lucky streek on the snooker game, as can be seen by her first go winnings

Chris was there to support, and advise, although he wasn't all that impressed, given most of the payout was put in by him and Stu the go's before

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Oncology

A year ago we got the first glimpse of what Jules had in detail, (The Oncology Clinc), quite scary, shocking, not what you'd imagine.

And to think, the thoughts back then where to look at radiotherapy to sort out the last bits left.

Alot's changed in a year.... And alot's changing each day, every hour, ticking away with each minute....

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April 22, 2004

So What IS Happening?

Many people have been asking what's the latest, and since it's not always clear, here goes.

I've stuck it in the extended bit so you can read by clicking the link. If you don't want to read it, you don't have to click...

Talking
Jules is talking in single words, and needs real pushing to get more than "Yes" and "No" out of her. This is a combination of tiredness and the tumour messing with her communication side of the brain, something that's been going on ever since the last operation. Some of it is also down to the damage caused by the stroke. She still has her moments, with statements like "Deaf shit", "Stop tickling me", so she is still able to string a sentence along when forced. And I think that's the key now, she HAS to be forced into it, as her frame of mind and energy means she's reluctant to do it herself.

Listening
Jules has bad hearing in her right ear, again because of where the tumour is growing. She has clear and complete hearing in her left side, and can hear the ripping of a Mars wrapper at 100 paces

Seeing
Jules is now completely blind Nothing more to say on that

Moving
Jules is completely bed-bound now, with movement in her right side, and little or nothing down the left. She still has feeling in her left leg, but it's not that much. Again, this is the tumour slowly pushing it's way into that area of the brain which controls the feeling and movement.

Pills & Potions
Keep looking at So What's This Treatment All About? for updates as and when I find more info on the stuff Jules is taking. And What Are You On? for the other medicines, drugs, tablets...

Overall
Jules is going downhill, there's no way of getting away from it. The nursing staff have said as much, but as always, no-one can say for certain how long, and when. If anything can be said, it's going to be weeks and months, not months and months

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April 21, 2004

Family Support

I must admit, before talking to the Family Support woman, Kim, I thought I didn't need to talk things over with anyone. You don't think it'll help, and what's the point, as they can't understand what you're going thro' more than your friends, family, or can they?

Well, I'm glad to say I feel like a MASSIVE weight has disappeared from my shoulders. And maybe THAT was what was giving me the stiff neck and shoulders - the need to have a complete stranger say, "Don't worry, you've done as much as you can, there's nothing you've missed".

Now it's convincing everyone else to go and see her.

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April 20, 2004

Songs For Whoever

...is the title of an album by a bunch of songsters from up't North. And something Janet and I listened to on our way down the A1 to London every night. Sometimes sad, sometimes happy, but music has that ability.

Well, Sting released a new album recently, and it was the intention to make it the first concert Jules went to. Except that it's in May, and with the way things are it'll be likely things will have taken a step for the worse. Not ignoring the logistics of trying to get her out now.

And there's Coldplay, depreasing enough as their songs seem...

Not too sure why, but the following need posting up...

The Book Of My Life

Let me watch by the fire and remember my days
And it may be a trick of the firelight
But the flickering pages that trouble my sight
Is a book I'm afraid to write

It's the book of my days, it's the book of my life
And it's cut like a fruit on the blade of a knife
And it's all there to see as the section reveals
There's some sorrow in every life

If it reads like a puzzle, a wandering maze
Then I won't understand 'til the end of my days
I'm still forced to remember,
Remember the words of my life

There are promises broken and promises kept
Angry words that were spoken, when I should have wept
There's a chapter of secrets, and words to confess
If I lose everything that I possess
There's a chapter on loss and a ghost who won't die
There's a chapter on love where the ink's never dry
There are sentences served in a prison I built out of lies.

There's a chapter on fathers a chapter on sons
There are pages of conflicts that nobody won
And the battles you lost and your bitter defeat,
There's a page where we fail to meet

There are tales of good fortune that couldn't be planned
There's a chapter on God that I don't understand
There's a promise of Heaven and Hell but I'm damned if I see

Now the daylight's returning
And if one sentence is true
All these pages are burning
And all that's left is you

Though the pages are numbered
I can't see where they lead
For the end is a mystery no-one can read
In the book of my life

The Scientist

Come up to meet you, tell you I'm sorry
You don't know how lovely you are
I had to find you, tell you I need you
Tell you I set you apart
Tell me your secrets, and ask me your questions
Oh lets go back to the start
Running in circles, coming up tails
Heads on a silence apart

Nobody said it was easy
Oh it's such a shame for us to part
Nobody said it was easy
No one ever said that it would be this hard
Oh take me back to the start
I was just guessing at numbers and figures
Pulling your puzzles apart
Questions of science, science and progress
Do not speak as loud as my heart
Tell me you love me, come back and haunt me
Oh and I rush to the start
Running in circles, chasing our tails
Coming back as we are

Nobody said it was easy
Oh it's such a shame for us to part
Nobody said it was easy
No one ever said it would be so hard
I'm going back to the start

Posted by alan at 10:52 PM | Comments (0) | TrackBack

April 19, 2004

Off Sick, Thinking

...about life, work, why I seem to be falling ill so much lately...

Been relistening to Del Amitri, a band I used to listen to alot many years ago (1994-ish). Introduced by a good friend, not sure how you describe the music, but it's something, on some tracks, that works well played loud. And loud music has comforting effects, as another friend regularly awoke me with and assured me it was a good thing...

Anyway, felt like adding one here, don't know why, but, hey, I'm full of Lemsip, whiskey, and ibuprofen, so it's all a little hazy anyho's

Tell her not to go
I ain't holding on no more
Tell her something in my mind freezes up from time to time

Tell her not to cry
I just got scared that's all
Tell her I'll be by her side, all she has to do is call

Tell her the chips are down
I drank too much and shouted it aloud
Tell her something in my heart
Needs her more than even clowns need the laughter of the crowd

Tell her what was wrong
I sometimes think to much
But say nothing at all
And tell her from this high terrain, I am ready now to fall

Tell her not to go
I ain't holding on no more
Tell her nothing if not this; all I want to do is kiss her

Tell her something in my mind
Freezes up from time to time.

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April 18, 2004

Shaving??

Awoke this morning to remember that someone had said in the pub last night that 2 guys where to have their chests waxed Well, they did, and disappointly, they didn't seem to be in much pain. Would publish the pics, but they're kinda boring

Jules on the other hand, was awake and a little more responsive than yesterday. But still very tired, and worryingly refusing her medication. Hopefully this isn't another drop, as we're only just coming to terms with her eyesight going. Tomorrow's a day off, so a chance to recharge both our batteries

Posted by alan at 10:28 PM | Comments (0) | TrackBack

April 17, 2004

Sunny Day

Weather's been cracking today, managed to get loads sorted outside. And then popped over to the Hospice to see Jules. Janet had managed to get her out of bed and into her new chair, and go for a walk in the gardens.

She seemed a little less awake than yesterday, which was disappointing, but I guess she's going to have more of these off days now.

Pics in the extended bit...

Outside in her new chair, wrapped up as the early evening Sun mean't it was getting a little chilly

Smiling, although half asleep as well

Back inside getting warm and ready for dinner

Eating, something Jules is doing more and more as the steroids build her appetite up and up and up

Jaffa Cakes, now part of Jules staple diet

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April 16, 2004

On My Own

Popped over on my own tonight, as Janet was out catching a film, not having had chance on Wednesday. Of course, Orange are doing free tickets on Wednesdays, which both my brother's are taking full advantage of

Jules was really awake tonight, and we spent the evening listening to the telly - quite peaceful. And when Top-ofThe-Pops came on, she was gigging her hand to the beat Hopefully this burst of energy will be around for the weekend, as the weather's looking good

Posted by alan at 9:52 PM | Comments (1) | TrackBack

Updates on Treatments

Eventually got round to updating the links in So What's This Treatment All About? so that it's got pointers to other stuff out there on the web.

I've also pulled together some more links on stuff to do with the Vitamin B-17 aspects, including some clinical trials and official views...

Links:

• Cancer.gov - Laetrile-Amygdalin (PDQ®) - Vitamin B-17 according to the US Cancer government body
• The Rise and Fall of Laetrile - the chemical version of Vitamin B-17
• Cancer.gov - Levels of Evidence for Human Studies of Cancer Complementary and Alternative Medicine (PDQ®) - results and info on official studies into some of the alternative treatments, including Vitamin B-17
• The Chiron Clinic - The place supplying the Vitamin B-17 treatment for Jules
• Dr Nyjon Eccles" - info on the doctor involved in the Vitamin B-17 treatment for Jules
• Cancer Research UK - The UK cancer charity
• Quackwatch - Cancer - views on cancer treatments from Quackwatch Online
• BBC NEWS Health Rating call for cancer websites - Something I'm very interested in, since a number of the sites, including The Chiron Clinic, are very out of date, and other sites give little or no research evidence into the treatments they're offering.
• Healing Daily - Cancer prevention measures
• CancerBACUP Diet therapies

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April 15, 2004

Food, food, food!

Tonight was a night of food. Food at the hospice, food at Sainsburys, and food at home

A few pics in the extended bit...

Straight over after work, via the chippy, and Jules had her chips, oh yes

Iris and Jenny, friends of Janet's, popped over to see Jules, but even that didn't take her off the chips....

Just had to show off the car, having had chance this weekend to clean it after over 4 months. Nice and shiny again

I left around 9pm, and had my orders for tomorrow night. "Garlic mushroom, big", so popped into Sainsburys on the way back. Home and then into the kitchen for another culinary night

Garlic mushrooms, and on the top right, Nige's famous Nutmeg Chicken, yummy

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April 14, 2004

Found It!

The pic of Jules when she first came out of hospital, with a MASSIVE plate of chips. And tonight she said she wants chips and mayo brought in

Also, after reading about the reduction in the chocolate mountain I picked up a big bag of goodies from Bob at work. And you'll be glad to know that one of the packs has now gone

Pics in the extended bit...

Jules, munching her way through a big plate of freshly made chips and mayo, yummy

Jules, putting away a chocolate teacake with little trouble

Soon the box had gone, and Jules was coated in sticky goo

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April 13, 2004

She's Not Home

A year ago she was, after the first op, sitting downstairs, munching on chips. We took photo's back then, but never published them since Jules wasn't too keen on people seeing her like that. But now it's different, so I've stuck a few up in the extended bit...

Jules, having just gotten home, awaiting the arrival of more freshly cooked chips and mayonnaise. There is a pic of her munching when she first came home, but I can't find it anywhere.

Jules, a few days later, still quite swollen, but bearing up to it all.

And finally, Jules on Sunday, in the sun.

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April 12, 2004

Power Cut

Just this minute had a power outage Only lasted a second or 2, but it's the second one in less than a month. Although the last one happened at 3am and woke me up. You see, we have smoke alarms running off the mains, the reason being that, in the event of a fire and the power being cut, they go off. Snag is, they also go off if the power's cut Hopefully there won't be another one later tonight, or in the morning

Posted by alan at 11:02 PM | Comments (0) | TrackBack

Tidy Day

Spent today clearing up around the house after the weekend. Lots to sort, loads to do which I would've done if I'd not had visitors Washed the car, sorted a bit more of the garden, and finished sorting the paperwork in the back bedroom. And loads of washing for Jules , most of which I took back today

Went and saw Jules at lunchtime with the rest of the curd cake. Helped her with dinner, all the medicines, and then nipped off when the staff came to get her up and dressed. Yeap, she'd been asleep all morning, and was just waking when I turned up for lunch

She still seems tired from the weekend, so hopefully her batteries will be charged up tomorrow and she'll be bright again

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April 11, 2004

Chris Cooking

Well, he would've done if the shops had been open. Instead we went to the Fisherman and had a meal there. And nice it was too, with lots of beer and then pink champagne back at Janet's courtesy of Chris and Yuen. Then taxi back, and bed, well, in a few minutes.

Jules was really quite washed out today, not very chatty at all. And the right side of her face is swelling quite bad too But she's still happy, nothing seems to be bothering her. And after a long run of visitors today it's not too surprising she's tired out. She'd be getting a break from everything tomorrow, except that it's a bank holiday so I'm allowed to pop in Got the rest of the curd cake to finish off, so I think I'll nip over on my own and the pair of us can finish it off together

We managed to get Jules out, since the weather had held off from raining just enough

Jules in her new wheelchair, soaking up the rays.

Once back inside it was time for some more chocolate, damn stuff gets stuck in your teeth...

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April 10, 2004

Fallout From Last Night

Woke up this morning wondering what had happened. I was sat bolt upright, having slept that way, with the stiffest neck in history. Ian had crashed out on the sofa, and Nige was collapsed on the floor. A Gareth's Special, (English breakfast with a healthy amount of garlic ) and we were ready to face the day.

Mum's turned up, and we're off to see Jules. Then Nige and Ian are away back home, having left their mark in another unsuspecting Southern village....

Watch this space for the pics

A quick show of what was to be consumed....

But first, the pub, and Nige trying hard to solve the pub puzzle

And then a battering from his lil'l bro Ian, for not letting him have a go

The favour returned, and Nige punches Ian back

Gareth show's them how a regular does it

Ian, trying out smoking, cough, cough

And the Prince of Darkness smoking too

Gareth, bemused by all this amateurish palaver

We then took to the pool table, to show the locals what playing pool is all about, well, sort of

Nige, trying a new method of striking the ball by looking sideways

Taking a proper shot, and this time it goes in

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April 9, 2004

Stotfold Get Ready!

Just come back from Gareth's via the Hospice. Jules is okay, tired, but awake and talking a little. Janet and Debbie are over there at the mo', as I've had to dash home and get Nige and Ian out and about.

The bruv's are all but ready to go, so I'd better get off. We're going over to Gareth's local in Stotfold. They don't know what they're letting themselves in for tonight

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April 8, 2004

They're Here!

The bruv's have just arrived so I'm off to put on the kettle and sort out some tea, or takeaway, which ever tickles their fancy.

No point going to the pub now, as it'll be chucking out in just over an hour. And we don't want to spoil ourselves for tomorrow night Besides which, I've gotta be over Stotfold by 8am to sort out stuff for Tuesday Will I be up in time?

Jules, her hearing atuned to the rustle of paper, just knows there's something chocolatey around

Jules mum, Janet, had brought in a very large slice of chocolate cake, baked by a friend at work

And it wasn't long before Jules was demolishing it

Licking her lips, and it's all gone

Then it's onto the medicines, and a drink to wash the lot down.

Posted by alan at 10:13 PM | Comments (0) | TrackBack

April 7, 2004

Long Day At Work - Short Day At Hospice

Long ol' day at work, and a long ol' time over the Hospice seeing Jules . Will be glad to hit the pillow tonight

Jules was fairly awake tonight, managing to munch her way thro' the remains of the cookies we brought in on the weekend. A mountain of washing has come back with me, having forgotten to collect it all on Saturday Ah well, I've nowt else to do when I get home really, now, have I

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April 6, 2004

Didn't Go Over Tonight

Instead popped out with Gareth for a couple down Bottles in the Old Town. We've a presentation first thing after the Easter break and I've just realised we've not got Friday and Saturday to sort it out before hand So a nights brain dump now, and then Good Friday to sort out the technical bits and bobs, with time in between to get what we need from work to do it at home.

Jules was okay tonight, Janet said she was a little tired and not too chatty, but took her medicine, as well as a HUGE amount of choc's. I reckon that must be getting to the end of the USA choc's from Thornton's now, so if anyone out there's waiting for the signal, it's okay to start restocking her chocolate shelfs

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April 5, 2004

Quiet Night In

Monday's are becoming a night of rest now, as the visiting isn't allowed. And tonight was a back to cooking one A monster curry with chillies, mushrooms, lots of herbs and spices, top nosh

And whilst we're at it, I'll post up some tips on cooking each week as I stumble around in the kitchen

Cooking Tip 1
When using chillies, make sure you wash your hands thoroughly SEVERAL times, as your eyes will sting when rubbed if you don't....

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April 4, 2004

Long Day

Spent most of today over at the Hospice. First off an early start to have a chat with Dr Lucas, one of the doctors there, about Jules and her progress. And then later in the afternoon for takeaway

Pics, news, the lot, in the extended bit

Jules was less than willing to get up this morning, wanting to stay in bed, asleep. We even go told to go

We went and had a chat with Dr Lucas and he's said there is a noticable change in Jules condition. It's more noticable by the staff who've been away for a week or more. And it's not good news It's apparent from the headaches, her tiredness, and other things, that the tumour is still making progress, slowly. The good news is that he doesn't think the prognosis of Easter is likely, mainly because Jules hasn't been getting worse quickly. But he did say it was still difficult to say whether it would be mid-year or Autumn time when things come to a close We then had a chat with the nurses, commenting on how well she's got on at the Hospice so far, and what we could do to maybe get her home for a day sometime soon.

By the time we got back into see Jules lunch had arrived, and not surprisingly she was wide awake. Her appetite has rocketed since they put her on the stronger dose of steroids, as the pictures reveal

Lunch is served, and despite her eyesight, she was determined to eat it herself. "Spoonfed", she said to Janet, shortly before giving her the look

"Cuppa tea" and lunch is over

Yes, that is 3 cookies in Jules hand She went on to demolish several more, as well as some jelly babies, mini-muffins, and half a Tolberone

We nipped home after that to get the bedding, and sort out some shopping ready for pizza night But when we got back Jules had decided she didn't want me staying over again, so, instead, I stayed a little longer and left when she'd dozzed off

Pucker up

Fast asleep, I could've stayed there for ever

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April 3, 2004

What A Difference A Year Makes

A year has passed since Jules first went into hospital. Reading back, The Big Day..., it's hard to believe what's happened since then.

Some pics and comment in the extended bit...

Jules less than a week after the first op, feeling and looking like she'd been in a Leisure Park bust-up (eh Laura )

Me n Jules, home and settled

Me n Jules, the night before the second operation, something we never expected so soon, and something I wished never happened

And finally, the pair of us last week, nearly a year since the first op, and over a year since we found out the cause of all her troubles When you look back on what you can loose in a year it makes you realise just how precious and important each day becomes.

Posted by alan at 10:46 AM | Comments (2) | TrackBack

Advice from Mailing List

There's a mountain of advice and support from the BRAINTMR Email List that's been of use and support over the last year. A recent posting I've pasted over here. Hope those of you reading looking for answers find it of use

Posted by Brain Tumor Research/Support [mailto:BRAINTMR@MITVMA.MIT.EDU] On Behalf Of SANDRA NORTON
Tips for Caregivers

The role of a caregiver to a brain tumor patient can be quite challenging but yet very rewarding. As things progress or decline with a patient, we find ourselves asking "what next, "what can I do", "what resources are available to me". Unfortunately, most caregivers are not afforded the information concerning their responsibilities, wasy of making care giving easier, etc.

LEARN ABOUT YOUR CARE RECIPIENTS MEDICAL CONDITION
Speak with the physician about your care recipient's diagnosis and prognosis. As what you may expect in the future. Spend time in the library or on the internet to conduct your research. Learn every thing you can concerning your loved one's illness or chronic condition. Knowledge will empower you to be a better caregiver.

BECOME N EDUCATED CAREGIVER
Try to attend caregiver training classes. Learn about hands -on techniques, such as transferring safely, proper skin care and lifting properly.

BECOME AWARE OF HAZARDS
Make your home safe for your loved one. Be aware of fire hazards such as stoves, other appliances, matches, lighters, and cigarettes. Watch out for loose rugs, cluttered pathways and inadequate lighting. Adjust the water heater temperature settings to prevent burns.
Install bathroom grab bars and non -skid rugs. These are just a few home suggestions.

WONDERING WHERE TO START?
Evaluate both your short term and long term needs as a caregiver. Start by listing those things you might need help with now and in the future. For example, a short term need might be to move your loved one's bed down stairs. A long term need might be a transportation issue to medical appointments. Contact your local health service for support and help.

NEXT MAKE A LIST OF ALL THE INFORMAL SUPPORTS
family members, friends, and neighbors and how each person can help. Repeat this process for formal supports such as home care agencies and transportation services. It is important to set a time frame for any action that needs to be taken. Having a plan for both formal and informal supports and implementing that plan will greatly reduce your stress as a caregiver.

PROTECT YOUR HEALTH
If you can't take care of yourself, you won't be able to continue to be a caregiver. See your doctor regularly, get screened for stress and depression, get plenty of rest, eat well balanced meals, exercise regularly and accept help from others. YOU ARE IMPORTANT

RECEIVE COUNSELING SERVICES
This is a service that I wished that was available to both Jennifer and me during her journey. Contact your doctor about these services.

MAKE TIME FOR YOURSELF
Set aside time regularly so you can pursue your own interests and hobbies. Providing care giving is stressful. All caregivers need time away - it's good for the care giver and the patient.

LEARN ABOUT OUT OF HOME OPTIONS
Here is another area that care givers are not given much information on unless the patient has been recommended for Hospice. Learn about in-home care options for help at home. Typical services include personal care, home maker, home delivered meals, transportation, and emergency response system. Many caregivers hire their own workers privately or pay an agency directly to provide care.

Check Your Local Agencies to see what services you and your loved one will be entitled to. One may also want to call Life Stream Services, Inc at 1-800-589-1121 (USA)

I cannot attest to how this agency works but it may be worth the telephone call.

Sandie Norton

Proud m/o Jennifer, age 24

Diagnosed with Anaplastic Astrocytoma, grade 3 in July 99.
Surgery with Gliadel wafers in Jul 99.
Completed stereotactic radiation in Oct 99.
Two new tumors found on left occipital lobe in Oct 00.
Completed 12 Rounds of Temodar. Tumors found in and abutting the left lateral ventricle in Dec 01.
Completed 7 rounds of CPT-11/Cisplatin. New tumors found in several
new locations in Jun 02.
Diagnosed with Gliomatosis Cerebri in Aug 02.
Completed one session of the intra-arterial chemotherapy in Aug 02.
Entered Hospice Facility on 29 Aug 02. Received her Angel Wings on 30 Sept 02.

Posted by alan at 9:28 AM | Comments (0) | TrackBack

April 2, 2004

Passed!

Got the results of the Primavera 50 question test today, and I've passed, 98% Now I've got access to the Primavera Extranet so I can start to learn about some of the other tools in the suite, as well as understand a bit more about the latest release. And after this week away in London with all the other consultants and resellers, it's definately a qualification worth having.

Now I can think about moving onto bigger and better things. But first some practise on some unsuspecting work trainees

Posted by alan at 9:59 PM | Comments (2) | TrackBack

April 1, 2004

And Finally...

It's day 4 of the course - PHEW!

The course has but finished. All the detail stuff is over, and it's hints and tips, Q&A this afternoon. Hopefully we can get away for 4 and miss the rush back

Last nights visit wasn't too good, it's now apparent that Jules has lost her sight. She's quite unresponsive and isn't talking much either, which doesn't help matters. But she did grab me and give me an enormous hug, so the thought's still there, even if the talk ain't I guess this is yet another stage in the process which I wished would never happen

I remember back in August Jules saying she didn't mind whatever happened during or after the second operation as long as she still had her eyesight. A lots changed since then, and what's frustrating is Jules can't articulate what she's thinking, so I can't understand what she's feeling. "Is she scared she can't see anymore?" - don't know And that's probably the MOST frustrating thing for me, not knowing what she's thinking about all this

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

Can't Imagine...

... what it must be like, to wake up one morning and not be able to see. Complete darkness, nothing. The nearest I've been to it was once as a Scout, potholing in the Pennines just outside Castleton. Near to the end of the journey down the instructor told us to switch out our torches. And it was dark. The instructor told us then that it was as near as we would get to being blind without actually being blind. Scary, but not frightening, since you switched your torch back on and you could see once more.

Someone's torch went out yesterday, and it doesn't look like it's coming back on

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