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_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:Hello everyone...

Oks, well, I've had some bad news and thought I would post on here for advice on alternative therapies.

I've had a look through the existing threads (nice search system Malcolm!!) but didn't find what I was looking for, so I hope this is ok.


So then...

Just over a month ago my mother turned yellow.
It was two days before my parents were due to go on holiday, and instead she ended up in hospital.

They discovered it was a blockage near her bile duct, and after sticking a camera down her throat, found out she had a tumour on her pancreas.

She was eventually sent home for a few weeks to recuperate, then brought back in for an operation last Friday.

We discovered then that the tumour on her pancreas is too big - 6 cms - to operate on, and parts of it have spread to nearby glands.

The prognosis isn't good. They've told her between 6 months and a year, but any reseach I've done shows people with pancreatic cancer lasting between 4 - 6 months.

Our family is coping well, considering, so far.

(Personally, I feel like I'm constantly going to cry.
I try not to think about her leaving us as much as possible. My mother is the strongest person in the world... She is kind and lovely and despite having pissed me off often, has done a splendid job and has had a splendid life (she's travelled all over the place - took a boat to Australia from Ireland 40 years ago to work as a nanny on a cattle ranch!! She came home, by boat, via NZ, Fiji and the Panama Canal - in a time when tourism wasn't Lonely Planet travel-by-numbers).

At the minute, I'm coping. I'm finding myself running about my parent's house 'doing stuff' for them while also trying to keep a performance business afloat. That's been a barrel of laughs in itself... anyone setting up a business in the arts - prepare yourself now for the bitchiness, competition, jealousy and lack of support.

My deepest apologies to m'lovely friends on here if I haven't responded to your PMs or calls recently - thanks BamBam and Fluff x).

Jesus... that was a bitter and twisted rant... humblest apologies for that... redface

Anyways... I have posted this for a reason rolleyes smile

The doctors are still deciding whether mum should have chemo.
None of us are very happy with that idea... don't want her last few months to be spent throwing up.

She's got a very strong Christian faith, which keeps her bouncing through each day (lol, and she keeps emotionally blackmailing me to convert!!! Lol... I've told her it won't happen, but thanks anyway smile )

But I want info on alternative therapies... things that might reduce it, or just prolong her life for a bit. Does anyone here have any advice on where I could look?

I know not to accept intershnet advice as gospel, but it's good to get a guideline - or a point in the right direction.

Electro-magnetic therapy? Acupuncture? Organic foods and no tap water?!!

Does anyone here have any helpful hints?

Thanks so much for your time... and go home tonight and give your parents a hug... they could be gone much sooner than you think.

Love and hugs to you alll
Clare xx


Getting to the other side smile

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PyroWill
PyroWill

HoP's Barman. Trapped aged 6 months
Location: Staines
Member Since: 4th Aug 2004
Total posts: 4437
Posted: Written by: _Clare_


redface

Thanks Will... and I really appreciate your message.

Hope to see you at Play this year, though I'm not really sure what state I'll be in... I suspect I'll need to see you guys around then... but we'll see. thanks hug2





I'll be there, am prepping the hug now smile


An eye for an eye only ends up making the whole world blind

Give a man a fish and he'll eat 4 a day hit a man with a brick and you can have all his fish and his wife

"Will's to pretty for prison" - Simian

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_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:Hurrah for huggery!

hug

Birgit... hope you had a splendid adventure lady... thanks for the sciency info... I knew it had something to do with her pancreas and gallbladder, but wasn't sure what.

However, it's come down again today... and she's much less yellow than she was on Thursday.

She expects to be getting home tomorrow... not sure why, she just wants to. Hope she does, she'll be really disappointed otherwise.

Anyways, all seems grand at the minute... biggrin


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_3C_
_3C_

Daywalker
Location: Dublin!
Member Since: 13th Feb 2007
Total posts: 215
Posted:I'm glad the bilirubin numbers are going down for her.

I hope she gets to go home tomorrow like she wants to. I'll keep my fingers crossed for her!!

hug


Speed of Dark: As yet unmeasured, but believed to be faster than light owing to its ability to move so quickly out of light's way. -- Terry Pratchett

[total number of times I've been hit in the head with poi: 10! <--- Double Digits!!!!]

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_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:Danke biggrin

Getting to the other side smile

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_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:So then...

She didn't get out yesterday, much to her utter disgust.

As far as she was concerned, the biliruben was coming down, and because of junior doctor dithering, she had to spend another of her last few days in hospital.

Not best pleased.

However...

bounce bounce bounce

Got a wee phonecall this morning, from a very giggly mother... she's getting out this morning...

So, dad is on his way up to the hospital to collect her...

Thank god. Seriously, I was starting to worry.

She can get some fresh air and a good night's sleep... that'll sort her out biggrin

Hurrah smile


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Skulduggery
Skulduggery

Pirate Pixie Crew Captain
Location: Wales
Member Since: 12th Aug 2004
Total posts: 8428
Posted:That's great news Clare. I hope she feels much more herself when she gets home. Being in hospital, however nice the staff are, is yucky.

hug


Feed me Chocolate!!! Feed me NOW!

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Spanner
Spanner

remembers when it was all fields round here
Location: in the works... somewhere...
Member Since: 27th Feb 2003
Total posts: 2790
Posted:cool Very glad to hear it smile



hug


"I thought you are man, but
you are nice woman.

yay,

:R"

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_3C_
_3C_

Daywalker
Location: Dublin!
Member Since: 13th Feb 2007
Total posts: 215
Posted:Horay!
Glad she's able to come home!
bounce bounce2 bounce


Speed of Dark: As yet unmeasured, but believed to be faster than light owing to its ability to move so quickly out of light's way. -- Terry Pratchett

[total number of times I've been hit in the head with poi: 10! <--- Double Digits!!!!]

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jo_rhymes
jo_rhymes

Momma Bear
Location: Telford, Shrops
Member Since: 10th Apr 2005
Total posts: 4525
Posted:yay!! biggrin

Hoppers are angels who lift us to our feet when our wings have trouble remembering how to fly.

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_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:Heheheheh.

Today is a good day.

And tomorrow will be better smile


Getting to the other side smile

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faith enfire
faith enfire

wandering thru the woods of WI
Location: Wisconsin
Member Since: 27th Jan 2006
Total posts: 3556
Posted:yay hug

Faith
Nay, whatever comes one hour was sunlit and the most high gods may not make boast of any better thing than to have watched that hour as it passed

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fNi
fNi

master of disaster
Location: New York
Member Since: 8th Mar 2004
Total posts: 3354
Posted:great to hear hug2

kyrian: I've felt your finger connect with me many times
lou kitten: sneaky little meatball..
ezz: please corrupt me more

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_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:So then...



She got out last week and was a bit down for a while... she's feeling annoyed at being so slow to do everything, although her colour has improved and she's thoroughly enjoying being out of hospital.



Nonetheless, her mood was still very down, which was frustrating.



But I got a phonecall from her today... they're going on holiday again next week!



Not too far this time... just to a lake near Lough Neagh. A four-day mini break biggrin



She's delighted and bouncey and muchly looking forward to it.



Hurrah biggrin

Isn't it great how much looking forward to something can help?



I really do think that she'll live longer if she keeps on in a good mood...





On the other hand...



I'm not doing so good about it all.

I'm not being emotional (for the moment), but I know I'm not handling it well.



I'm still not seeing her enough - although, I don't know what 'enough' is.



People keep saying to 'make sure you use your time well' - but I don't know what that means.



I'm feeling guilty about not spending enough time there and the possibility of not 'making sure I use my time well' is quite awful.



Do I really want to ask her questions that she can't answer, forcing her to think about the inevitable and bring down her mood?



Or just continue to know that she's ill and dying, but as there's nothing we can do about it, we'll just forget about the last part.



This is another problem.



I don't think I've accepted in my head that she's going to be gone soon.



I keep thinking how cool Play and the other conventions of this year are going to be... but in reality, I have no idea what will be happening - and it's only in the next couple of months! The thought frightens me.



Anyone who knows me knows I like to feel in control, to have some sort of order in my life... it helps me relax when I know that everything else is clear.



But with this, I don't know anything... I can't plan anything, and I have absolutely no control...



It's really very annoying.



I got quite upset on Friday... writing the Mother's Day card.

I knew it was probably the last message I would write to her... so put some effort and thought into it...



She didn't even mention it frown

She said thanks for the card... but didn't mention the note at all. Bah. Ah well, I know she has other things to think about.



Anyways... I guess you just keep going.





And... I had a really fabulous, and intense weekend, which made me smile lots, so that's good.





That's it for now.



xx


Getting to the other side smile

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Skulduggery
Skulduggery

Pirate Pixie Crew Captain
Location: Wales
Member Since: 12th Aug 2004
Total posts: 8428
Posted: Written by: _Clare_



I keep thinking how cool Play and the other conventions of this year are going to be... but in reality, I have no idea what will be happening* - and it's only in the next couple of months! The thought frightens me.





*Bold bit marked by me.
Isn't that true of any of us. No one knows what will happen tomorrow. There is nothing wrong with having hopes and dreams. Having things to look forward to helps all of us to feel happier. It's working for your mum right now to look forward to her holiday, so why can't it work for you to look forward to Play etc.

As for knowing the right amount of time to spend with your mum and which are the right questions to ask at the right time... well I don't think there is a definate 'right' to any of those things. You are a gentle and kind hearted person Clare. I think you have good judgement. Trust your instincts and go with what feels right to you.

I hope your mum has a fabulous trip to the Lake and that you find some feeling of calm.

Love as always from Jon and I hug


Feed me Chocolate!!! Feed me NOW!

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_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:Love and hugs back to you both, and thanks... hope to see you guys soon smile

xx


Getting to the other side smile

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mech
mech

Carpal \'Tunnel
Location: "In your ear"
Member Since: 9th Jun 2003
Total posts: 6207
Posted:reading this, it must be very hard for you, and scary to be able to put it into words, mots of us owuld not be brave enough to post this so opely, and speak not only of a loved one in such a beatiful way, showing such love and caring, but would deffinalty not post our our fears and worries about this.

firstly i think you are brave, and care massively. Both for yourself, for your mum, and for other who worry about you. i am proud of you (i know that sounds silly) for having the courage to face your problems, and also seek help, and comfort from your friends to help you through a hard time.


firstly the chlice, no matter what you are thinking, your mum will be thinking teh same, and i hope will be talking to someone about this also, it will be just as scary for her, making plans for the future, and making sure you will be ok, as will teh rest of your family.

i think teh old saying of "your parents live on in you" is the best way of helping, knowing that they will not only live on in your heart and mind, but also in the person you are as a whole.

spending the right amount of time, and conversations, i a gree with skully, you should roll with the flow (if possible) and when the time is right, talk about it, a little at a time if you have to.

i dont know you, and you dont know me, but from what i understand about you from HOP, which is mainly character stuff, i belive that your mum would be very proud of you also, in who you are, what you do, tha fact that you are independent, and taht no matter what choices in life you have made, that you are a well rounded person.

take heart in taht your mum will always love you, and that on some level, she will always be with you.

dont worry about tomorrow, thats a bizzar game to play, as you would always be worrying, i you need to worry about the future, worry about the next ten minutes, its a lot less scary, and will come sooner.

small steps.

laterdays

step


Step (el-nombrie)

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_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:D'oh!



Look below (double posted)



rolleyes

EDITED_BY: _Clare_ (1174995787)


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_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:hug2

Thanks Mech... I'm looking forward to seeing you at various things over the summer... we didn't really get a chance to talk much last time we met (Play 1?).

Thanks so much for your words... and thanks for taking the time to write...

It's not hard or scary for me to write about all these things... I'm actually a bit more concerned about the number of people (because I'm sure there are some) that find my openness difficult to deal with!

Thing is... I have a really over-active imagination, so, if I keep things bottled up or inside, they get blown out of all proportion and completely unmanageable.

So, I try to be open and honest to the point of bluntness. It means that I don't have anything brooding or growing in some dark recess of my head... but it also means that other people around me have to listen to whatever I'm thinking about at the time (which isn't a good thing!). It also leaves you more vulnerable to people who want to get rid of their own negativity.

"i think teh old saying of "your parents live on in you" is the best way of helping, knowing that they will not only live on in your heart and mind, but also in the person you are as a whole."

I think this is one of the most comforting things that can be said to someone who lives on after a loved one dies smile

Think about the millions of people who have lived, and died, in the history of this planet... are they known? Do we even know they existed?
Only through how they were remembered...

When my mum goes, she will live on through me, and through the lives of everyone she touched.

It's the same for all of us... when we die, we will live on through the lives of the people we have met and affected... which is also a good lesson to live by, I think.

Just while I'm here... Mum and Dad are off on their mini-break... somewhere on the west coast of ireland... The hotel's nice, and the weather's good. Hurrah!


Anyways... have a good day
xx


Getting to the other side smile

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mech
mech

Carpal \'Tunnel
Location: "In your ear"
Member Since: 9th Jun 2003
Total posts: 6207
Posted:hug

i would say that being open is not easy, so it does take guts, to open yourself to the possibilities of being scolded, or ridiculed, or looked down on by others, is not an easy thing to face.

i am not that strong. only a few people know what is going on in my life, and thats easier for me.

i think you are brave, and as long as you tell your mum you love her, and that you are proud of her for bring you up, and that you dont hold any grudges, or any bad feeling to her for anything in teh past. then thats the best you can do

she loves you, and she will be so proud of you to know that you are happy, and that you are well rounded, and that you have friends who you trust and who are able to support you when you need it.

erm....did we meet at play1? worrying, as im sure i would remeber such a sexy lady wink

let yoru whole family knwo you love them, make sure they know you are proud of teh things they have done

tell them, tell them more than you should, small jestures speak volumes.

shout it from teh roof tops,

but know in your heart that they know and that you know they love you back

hug


Step (el-nombrie)

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_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:Hahhahahahah.... you don't remember me?!

Awwww.... never worries... I'm sure I'll be seeing you somewhere soon.

I still have to have those conversations with Mum. I tried talking about it in the Mother's Day card... but she didn't seem to open.

However, we'll be going out next week to get a manicure smile so I'll talk with her then.

thanks x


Getting to the other side smile

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mech
mech

Carpal \'Tunnel
Location: "In your ear"
Member Since: 9th Jun 2003
Total posts: 6207
Posted:i don't think i remember you as i dont have a face to place you with, im sure we have met, and im sure we have talked, just cant place your face redface

i have a tendancy to call my mum and tell her when im happy, means that when i phone and tell her im unhappy, she knows there is a balance.

she will know you love her, its just nice to be told i guess..

smile


Step (el-nombrie)

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strugz
strugz

Carpal \'Tunnel
Location: Southampton - Possibly...
Member Since: 6th Mar 2002
Total posts: 3964
Posted:Clare hug as always...........

but my main point of posting here - Step hug you can me more grown up than i give you credit for biggrin

nice words dude smile

see all of you soon hug


"...We don't stop playing because we get old, we get old because we stop playing......."

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mech
mech

Carpal \'Tunnel
Location: "In your ear"
Member Since: 9th Jun 2003
Total posts: 6207
Posted: Written by: strugz



but my main point of posting here - Step hug you can me more grown up than i give you credit for biggrin



nice words dude smile







no im not



*girlie huff*



wink



cheers dude

hug


Step (el-nombrie)

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_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:biggrin

Glad this thread is bringing out the good in people...

hug2 for you both...

xx


Getting to the other side smile

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Durbs
Durbs

Classically British
Location: Epsom, Surrey, England
Member Since: 23rd Sep 2001
Total posts: 5688
Posted:[Side note]
See, we have all met
(That's Clare hiding under me...)
smile

hug


Burner of Toast
Spinner of poi
Slacker of enormous magnitude

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Neon_Shaolin
Neon_Shaolin

hehe, 'Member' huhuh
Location: Behind you. With Jam
Member Since: 13th Jul 2005
Total posts: 6120
Posted:Not sure if this is appropriate for this thread Durbs, but...

YOU C**T!!!

Now I have that image in my head for the rest of the day!

Besides you can't even see Clare's face in that pic!!


"I used to want to change the world, now I just wanna leave the room with a little dignity..." - Lotus Weinstock

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mech
mech

Carpal \'Tunnel
Location: "In your ear"
Member Since: 9th Jun 2003
Total posts: 6207
Posted:see that statement i just made to you in msn, twat face wink

Step (el-nombrie)

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_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:Hahahahhahaha... I was looking for that pic yesterday too Durbin...

Yep... we met smile


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_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:Hmmmm



frown



I just heard... they're home early from their mini break... mum's starting to get spasms in her back.



As always, she says it isn't connected to the tumour... it just happens (probably, she says, because she spent too long in the car). The doctor told them to come back early.



The spasms are taking her breath away... which isn't good, as she's already very breathless. She's on more drugs to control them (along with the small lab of pills she takes every day anyways)... the doc said they'd probably last about 4 months... umm



So, we're going to spend the day together on Tuesday. Go for a manicure, have a chat, visit funeral homes etc.



Am starting to get rather scared about dealing with this now.



For anyone at the start of the process...

Prepare yourself for the exhaustion that comes with it. It's strange, because you haven't really done anything exhausting... but this will always be in your mind, and it will hang over every thought you have...

There's very little let-up (unless you allow yourself to forget for a while), and then reality hits you suddenly.



smile there's no point in my explanation... many people reading this will go through something similar themselves, at some point in their lives (or already have)... and you guys will deal with it when the time comes hug



I feel a mix of emotions every time I think about this... guilty, frustrated, angry, exhausted, lonely, very sad, scared, nervous and weak.



Life goes on, eh?



But it's so horrendous to think that my life will only return to relative normality again at some time after my mum has gone... and what type of normality will that be?



Things change... they never stay the same... trying to keep remembering that.



x



PS: I sometimes think these posts come across as very self-obsessed. It's only because it's the only opinion I can give. My mum is in good spirits when she's speaking to me, most of the time. My dad seems to be just about coping, with occasional bouts of doing well, most of the time.



It's the events that happen in between these moods I think people are more interested in... because if you're reading this, and you don't know me, perhaps you're just trying to find out what happens to someone dying from cancer shrug



xx

EDITED_BY: _Clare_ (1175120525)


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BansheeCat
veteran
Location: lost
Member Since: 29th Jul 2005
Total posts: 1247
Posted:hug hug kiss

"God *was* my co-pilot, but then we crashed, and I had to eat him..."

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