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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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_Clare_
_Clare_

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

hug2

ubbcrying


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fNi
fNi

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

*vibes* hug


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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BansheeCat
veteran
Location: lost
Member Since: 29th Jul 2005
Total posts: 1247
Posted:Honey, you dont sound self obsessed. Dont even think about stuff like that! You sound very real, and are going through something difficult. It is appreciated that you share.

I do hope you find some way to get the rest you need. I found nothing touched it, I could sleep as many hours as there are in a day and still wake exhausted. It was much much later that finally lifted some. I think Mech, or someone earlier in the thread had it right, break it down to something less overwhelming. Just make each ten minute segment as manageable and as enjoyable as you can. Even when that ten minute segment happens to be at a funeral home...


Joy can come in the strangest moments, at the strangest times. Let humour and love infuse you and rejuvenate were it can.

xoxo
a


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

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Glåss
Glåss

The Ministry of Manipulation
Location: Bristol
Member Since: 8th Nov 2001
Total posts: 2523
Posted:Hugs
smile


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_Clare_
_Clare_

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

biggrin
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: Written by: BansheeCat





Joy can come in the strangest moments, at the strangest times. Let humour and love infuse you and rejuvenate were it can.





and at worse

a good fart joke will always crack a smile on some ones face...

wink


Step (el-nombrie)

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BansheeCat
veteran
Location: lost
Member Since: 29th Jul 2005
Total posts: 1247
Posted:so true! I actually started a pegging war at my fathers funeral, and it was amazing how it made people laugh and smile even through thier grief ...

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

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burningoftheclavey
burningoftheclavey

lurking like a ninja with no camouflage..
Location: over yonder
Member Since: 22nd Jul 2005
Total posts: 926
Posted:hug hug

it can be a bit of a whirlwind sometimes... and i know how you feel about normality, and feeling guilty about thinking about it like that. I had the fortune of being able to talk to my parents very openly about things, future and feeling etc. although my mum played down if she was in pain. everyone stayed positive for the most part and talked through it when they werent...and definitely laughter is an amazing thing.:)
hug

*good vibes n happy thoughts*


on spam robots - "Burn the robot! Melt him down, and then we can make lots and lots of money from his shiiiny juices!"

Owned by Brenn smile

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_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:Went to see them today...



And it wasn't so good, all things being told.



Mum is in alot of pain with the back spasms (as they've been called).



In honesty, they don't really know what it is, it's just sharp pain in her back, which makes her catch her breath (not good when her breath is already short). My mum plays down any pain too... which makes it even more frustrating... because we can see that she's suffering, but trying to be brave.



She has no energy to do anything, doesn't really want to talk about it, and is still deathly pale, tinged with yellow.



But the main thing today was how my parents moods changed. The physical symptoms are, unfortunately, to be expected, I guess.



Obviously, they're both feeling scared and are worrying lots...



My mum is worried because (in her mind) she cut short their holiday and lead dad to drive very quickly back to the hospital. He is worried because she is worried. Then she is even more worried, because he is worried.



Then, apparently, last night was very bad and mum was in alot of pain. Dad didn't really know what to do for her, which made him more worried.



So, the doctors have given her a few valium for the pain relief (which mother is disgusted by... she doesn't like taking drugs with a bad reputation rolleyes)... and this makes her even more worried.



Basically, I walked into the house this afternoon to find both parents subdued and feeling down ... worrying about things they can't do anything about and with no real hope for the future...



If you've seen this already, you'll know what I mean... but the first time (and every time after that) that you see your parents in a less than strong and healthy state is very unnerving. It brings up feelings of confusion, fear and a bit of anger too.



My attempts to explain the 'no need to worry' were met with a look which said 'you have no idea'. It wasn't really the right time for humour (I do usually try... just turning up generally means they laugh at me (in a nice, mildly despairing way) smile )



Meh... bad times and good.



I'm ok. I had a good phonecall yesterday which means I'm still doing ok today smile

EDITED_BY: _Clare_ (1175190061)


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jo_rhymes
jo_rhymes

Momma Bear
Location: Telford, Shrops
Member Since: 10th Apr 2005
Total posts: 4525
Posted:Clare, I am pretty much speechless. I don't know how on earth I'd cope, or even if I could, in your situation.

I remember when my mum had Bell's Palsy (paralysis of one side of the face). we didnt know when it'd go away, or if it even would. I remember my mum crying because kids were staring at her and making fun of her.

That broke my heart.

I wish you all the strength and courage in the world, and your mum is lucky to have such a wonderful daughter.

hug


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:It's a bit scary, eh, Jo?

Parents are supposed to be superheroes... and when you find out they're not... it kindof feels like you've been cheated.

A bit like when you find out Santa isn't real... and no matter how long you stand at the front gate, the Easter bunny won't come by with eggs (thanks dad umm smile )

Thanks for your wishes...



And I forgot to say... I'm not sure if it's the anxiety, or just general illness, or the big pills she's taking now... but she has completely lost her appetite.

She doesn't want to eat anything, and when she does, she's sick soon after.

It's not good as she needs food to keep her strength up and be able to digest the tablets.

Hmm.


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BansheeCat
veteran
Location: lost
Member Since: 29th Jul 2005
Total posts: 1247
Posted:I found that breaking the illusion of them as invincible 2-dimensional parental figures actually really helped our relationships, we became full rounded people to each other. It was easier to understand and forgive when I realized they were people, with all the same array of flaws and weaknesses and fear I had. The dynamic was much more real and human, instead of everyone playing some kind of pre- determined roles... So there may be an advantage to it too!


When my dad got to that stage ( no appetite, vomitting etc) I made him chocolate mousse, ya know the one I am sure wink and then brought out my very best super nutrient smoothie technology... putting all kinds of healthy yummy things in a blender. Seems he could manage liquidy things, and they were delicious! Better home made then those sugary ensure crap they offer in the hospitals here. eating very smal amounts, but more often, helped.

good luck xoxox a


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

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_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:Good idea!



My chocolate mousse making skills, however, never quite made it...



No matter how many times I've tried in the last 8 months or so, it always goes a bit soggy ubblol



But the smoothie is a good idea...



D'u have a couple of recipes?



x

EDITED_BY: _Clare_ (1175198157)


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jo_rhymes
jo_rhymes

Momma Bear
Location: Telford, Shrops
Member Since: 10th Apr 2005
Total posts: 4525
Posted:hmm, the only suggestion I have to get your mum's appetite up is a big spliff, and I don't know whether she'd be up for that!
A couple of years ago my brother made my nan some cannabis tea, which they shared, my nan loved it, but sadly was too frightened to try it by herself.

Chocolate mousse sounds bloody lovely. Does she nauseas alot? Ginger is meant to help with that. I just wish you guys the best! hug


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:smile

Nah, my mother is definitely not into the medicinal uses of cannabis... though I have suggested it as a joke.

Sure, she's even having problems with valium!

smile

The chocolate mousse is a very lovely recipe passed on by Andy Haus... who makes it brilliantly. Mine, on the other hand... is a bit wrong. More like chocolate sludge.

The sickness only came on yesterday and today... if it hasn't cleared by the weekend, I'll suggest the ginger tea.

smile
x


Getting to the other side smile

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burningoftheclavey
burningoftheclavey

lurking like a ninja with no camouflage..
Location: over yonder
Member Since: 22nd Jul 2005
Total posts: 926
Posted:peppermint tea as well calms a stomach, my mum drank that alot when she wasnt eating...and green tea...(although it tastes pretty rank in my opinion!!)
smile
hug


on spam robots - "Burn the robot! Melt him down, and then we can make lots and lots of money from his shiiiny juices!"

Owned by Brenn smile

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Birgit
Birgit

had her carpal tunnel surgery already thanks v much
Location: Edinburgh
Member Since: 27th Jan 2005
Total posts: 4145
Posted:Hey Clare hug

Don't know what I can say that hasn't already been said, but... my 2c:

Your parents have to find their own ways of dealing with it, don't put their worries on top of your own. They will, it won't be easy just as it won't be easy for you, but they will muddle through and you will, too hug

About your post a few days ago about being open, do it here. If they're not comfortable with it, don't make them talk about it - they may prefer it that way.

We had a long discussion when my grandaunt was diagnosed with terminal cancer. She was 80 already and in a very bad state, having just fallen and broken a bone and her cardiovascular system giving in, too, and they didn't tell her. My mum said she wouldn't want to know if she was going to die, but my dad said he'd never forgive us if he wouldn't be told. So if their way is to put it in the back of their minds as often as possible, it may be better to leave them to it.

You're really coping well, getting performances and workshops and all organised and working - many people wouldn't manage half of that!! I think I speak for everyone on here when I say that I really admire your strength, and I hope I can be anywhere near as brave whenever I am in a similar situation. *tips juggling hat* hug2


"vices are like genitals - most are ugly to behold, and yet we find that our own are dear to us."
(G.W. Dahlquist)

Owner of Dragosani's left half

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Skulduggery
Skulduggery

Pirate Pixie Crew Captain
Location: Wales
Member Since: 12th Aug 2004
Total posts: 8428
Posted:kiss hug2

One day at a time.... That's how it works.


Feed me Chocolate!!! Feed me NOW!

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Gnor
Gnor

Carpal \'Tunnel
Location: Perth
Member Since: 31st Mar 2003
Total posts: 5814
Posted:I agree with Skully. A day at a time and do what works for you.
If you find its too overwhelming dont be afraid to ask for help or take the offers made to you. People adore you and want to help. Allowing trusted ones to help is lovely. But also be aware that you are really really important and to watch how you are going. hug hug hug hug


Is it the Truth?
Is it Fair to all concerned?
Will it build Goodwill and Better Friendships?
Will it be Beneficial to all concerned?

Im in a lonely battle with the world with a fish to match the chip on my shoulder. Gnu in Binnu in a cnu

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FireTom
Stargazer

Member Since: 20th Sep 2003
Total posts: 6650
Posted:ditto

hug hug


the best smiles are the ones you lead to wink

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_Clare_
_Clare_

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





Thanks lads, it's really nice to hear the lovely comments, but you don't need to. It makes me feel a bit embarrased and doesn't really feel like the point of the thread... if that makes sense? smile



So then... it's been an interesting few days.



Thursday night:

Got overwhelmed with everything I had to do with business, tried to relax, and instead started meditating on Mum... I got really upset until about 5am when I fell asleep.



Realised alot of things - things I have to ask, etc... reality seemed to bite (partly inspired by a very nice PM sent last week).



It was like I had projected myself forward until after she had gone, and was asking her to come back... it was chilling, and scary, and I really wished I wasn't by myself frown



(I know I have friends and people to call on... but it's very different when it's 2am and you've no-one with you, and you can't call people cos they're asleep and working the next day. And anyways, the reality is that people don't like dealing with someone in hysterics at the other end of the phone in the middle of the night, despite any good intention)



Friday:

Was feeling out of sorts all day, but had to drive to Dublin for a gig (which was delayed and didn't go very well... it was just one of those days).



I visited mum before I left, and nearly wished I hadn't.

The valium made her very dosey, so she was sitting, slumped over, at the kitchen table... she seemed to have lost all will to fight and was reacting to the muscle spasms in her back - intense pain which makes her catch her breath frown



Saturday:

I was feeling better. Mum said she was fine, but that's not unusual.



Gig went well, so was feeling good.



But found out on Sunday that she had been sick and in alot of pain.



Sunday:



Visited them in the afternoon... she seemed to be doing ok.



I took part in Aida, the opera, last night, and got them tix to come see... twas a good idea smile



They hadn't seen me do anything before, so it was nice and gave them a lift to get out of the house and see a show.



Visited them afterwards too and she was looking much better... still pale and a bit yellow... but there was energy in her eyes, which made the difference. Dad looked happy too, which is good... because I know he's tired.





So then... spending the day with her tomorrow... I'm looking forward to it, but a bit apprehensive at the same time.



xx

EDITED_BY: _Clare_ (1175518730)


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:ok firstly, i would say that you dont knwo people dont want to help you at 2am in teh morning with your problems, until you call them

Its the nice part of you saying"no wait, its 2am don't pester people"

but what you have to relise that if people have offered, they like you, and would be happy to help you no matter what time.

I knwo i have sat up with a few friends talking to them on the phone at strange times during my life, so its ok, if some one says call me when you are down, then do it. you never know!

hug

secondly, i think it was an amazing idea for youto take them to your show. Well done! hug

i reckon the energy you saw was pride, and love, and knowing they have an amazing daughter smile

your mum should be told that you are an outsitanding person. who has lots of friends to back her up

one of teh regrets i have is that knowing one of my firends parents was dying of caner i never told them how much they should be proud of their child, as they where strong, well rounded, and an amazing person.

like i have said before make sure thye know you love them, and make sure that they know you are proud of them

hug


Step (el-nombrie)

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_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:That was one of the questions I'm going to ask tomorrow...

I need to know if she's proud of me or not... or if she thinks i'm just a slacker and should know better trying to arse about with fire at 28.


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mech
mech

Carpal \'Tunnel
Location: "In your ear"
Member Since: 9th Jun 2003
Total posts: 6207
Posted:i think she would be proud of you, else im sure she would have told you by now....

and i know lots of people do far less iwth their lives that even playing with fire....

ubblol


Step (el-nombrie)

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Gnor
Gnor

Carpal \'Tunnel
Location: Perth
Member Since: 31st Mar 2003
Total posts: 5814
Posted:Try MSN babe, bound to be someone somewhere in the world with a dry shoulder for you.

Is it the Truth?
Is it Fair to all concerned?
Will it build Goodwill and Better Friendships?
Will it be Beneficial to all concerned?

Im in a lonely battle with the world with a fish to match the chip on my shoulder. Gnu in Binnu in a cnu

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_Clare_
_Clare_

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

Getting to the other side smile

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BamBam
BamBam

Pooh-Bah
Location: London
Member Since: 1st Dec 2001
Total posts: 1810
Posted:Day or night means exactly that Princess. You have good friends because you're a good person (we can't all be wrong)

I think Mech hit the nail on the head..... if mummy didn't approve she would have told you by now. Seeing your child happy is all a parent wants, more so in the situation your family are in.

Remember to breathe life with every breath.

Love and Hugs

Lisa
xx


A kiss blown is a kiss wasted, the only kind of kiss is a kiss tasted.

I'm a woman. We don't say what we want, but we reserve the right to be pissed off if we don't get it. That's what makes us so fascinating and not just a LITTLE bit scary.

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BansheeCat
veteran
Location: lost
Member Since: 29th Jul 2005
Total posts: 1247
Posted:Clare, time change!



It is never the middle of the night here when it is there! Call me any time, get a phone card so it is cheap and you don't have to stress about it. I am more than willing to listen any time day or night.



I will pm my number, I think you might have it but just in case...



You definately are not alone, and wont be in the future. I know it is not the same as physically having someone who can just wrap you in their arms when they see you need it, yeah, that is nice to have. But visualize all the love here as a tangible thing, and wrap yourself in it so you can have a peaceful sleep.



I have no doubt your parents are proud, and showing them what you do is a brilliant idea! Really share all of it, let them know you fully!



love ya,

A


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

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_Clare_
_Clare_

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

I'm finding it helps to read this thread when I'm feeling rubbish...

Le sigh.

frown

So, I went to spend some time with her today... quality time, as they say smile

I have a big list of things to ask and to find out about...

We didn't get too far into it... just about the family history and memories from her childhood and where they came from etc.

Twas interesting... and I recorded it all on my dictaphone... I'll find a way to get the tapes onto CD sometime.

But... she doesn't have the strength to concentrate on things for too long... so I'll be back for another session smile

I think there will always be questions I won't have answered... but as long as I get some, then at least that's better than nothing.

She's having bad back spasms... you can tell they're bad because it makes her catch her breath... mum would never really admit pain. Not to me, anyways.

So, I did some ironing and household stuff... bimbled about... played the piano (badly) and generally gossiped.

It was nice... I've spent a lifetime not getting on with my mother... and it's so sad to think of the reason why we get on now.

Trying to visualise that love as a tangible thing Andrea... but I can't right now.

I guess feeling sad, exhausted and isolated is a part of this process... there's no point trying to disguise it, or find distraction in anything else.


x


Getting to the other side smile

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Gnor
Gnor

Carpal \'Tunnel
Location: Perth
Member Since: 31st Mar 2003
Total posts: 5814
Posted:Sometimes we get the chance to end our relationships loving each other openly.

Is it the Truth?
Is it Fair to all concerned?
Will it build Goodwill and Better Friendships?
Will it be Beneficial to all concerned?

Im in a lonely battle with the world with a fish to match the chip on my shoulder. Gnu in Binnu in a cnu

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