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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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faith enfire
faith enfire

wandering thru the woods of WI
Location: Wisconsin
Member Since: 27th Jan 2006
Total posts: 3556
Posted:and right now you may be thinking of it as stuff that needs to get done, but later on, it will be a great comfort not having to think about it, and also knowing things are the way your mother wanted...
my cousin's shiva? was just so awkward, but my great uncle's funeral was wonderful because it was arranged ahead and all we had to do is grieve
hug and strength


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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Mr Majestik
Mr Majestik

coming to a country near you
Location: home of the tiney toothy bear
Member Since: 9th Mar 2004
Total posts: 4693
Posted:if there was an emoticon that was crying i'd be using it right now.

hug

i think the people on HoP are some of the best in the world. smile


"but have you considered there is more to life than your eyelids?"

jointly owned by Fire_Spinning_Angel and Blu_Valley

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brodieman
brodieman

old hand
Location: london
Member Since: 11th Jul 2003
Total posts: 1024
Posted:i just read the intire of this thread, and im touchedby the support that has been offered by the hop community, and your bravery at posting up in the first place.
Never an easy thing to go through just do as your still doing and keep talking, their is obviously alot of love in your family... much love hugs and thoughts going to you


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maus
maus

Carpal \'Tunnel
Location: Sihanoukville, cambodia
Member Since: 14th Jul 2005
Total posts: 4191
Posted:Clare I really think you are doing an amazing thing.

I know you parents are as proud of you, as you are of them.

hug sunny


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_Clare_
_Clare_

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

Am on my way to the hospital.

Dad called today... the doctors were worried about the clots in my mum's fingers, so they brought her in today for blood tests.

I don't know the results or anything... but my dad then texted to say that she had to go for a chest X-ray (probably because of the laboured breathing... I mentioned a few weeks ago).

And I just got a call... because of that X-ray they're keeping her in for the weekend.

All weekend?!

Am quite scared... but adrenalin and the fact I haven't really thought about it yet, is keeping me going - and the reason I'm posting here.

I'm waiting to hear back from him before heading up to the hospital.

Laters x


Getting to the other side smile

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BansheeCat
veteran
Location: lost
Member Since: 29th Jul 2005
Total posts: 1247
Posted:Sending you and your family loads of love...

"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:Thank you Andrea... hope you're well lady smile

I think I panicked a bit unnecessarily...

Went up to see mum last night and she's doing grand... she's getting a bit of extra oxygen, and giving loads of blood tests... but seems to be happy enough, and looking forward to getting out of there.

I expect I'll have to get used to phonecalls from the hospital...

However... there were no beds on the ward, so my mum spent last night sleeping on a trolley (along with about 15 other older women) in the small and pokey corridor of the City Hospital!

They moved her into a ward this morning, but it must be terrible for those with more immediately dangerous illnesses to be sleeping in a corridor.


Getting to the other side smile

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Valura
Valura

Mumma Hen
Location: Brisbane, Australia
Member Since: 25th Apr 2002
Total posts: 6391
Posted:be strong my sweet...I hope your mum gets a bed in the ward and has the rest and relaxation she needs, very soon. hug hug hug

TAJ "boat mummy." VALURA "yes sweetie you went on a boat, was daddy there with you?" TAJ "no, but monkey on boat" VALURA "well then sweetie, Daddy WAS there with you"

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Gnor
Gnor

Carpal \'Tunnel
Location: Perth
Member Since: 31st Mar 2003
Total posts: 5814
Posted:Its the same problem here, and if they have beds they dont have staff. frown

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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Spanner
Spanner

remembers when it was all fields round here
Location: in the works... somewhere...
Member Since: 27th Feb 2003
Total posts: 2790
Posted: Written by: _Clare_



I expect I'll have to get used to phonecalls from the hospital...



However... there were no beds on the ward, so my mum spent last night sleeping on a trolley (along with about 15 other older women) in the small and pokey corridor of the City Hospital!



They moved her into a ward this morning, but it must be terrible for those with more immediately dangerous illnesses to be sleeping in a corridor.





Something similar happened to my nanny. She was eventually moved into a seperate room after my sister politely but in no uncertain terms told the hospital that's what was going to happen.

To be fair, the hospital's hands are sometimes tied but in our case, after challenging their - very institutionalised - ideas on what an acceptable standard of care is, we discovered that there was always something more which could be done.

I know your mum already doesn't like any "fuss" and I'd imagine that she'd say that they were all in the same boat, but it's still not a situation they should have been put in frown

I'm glad she's on a ward now, but if/when she's readmitted in the future and this happens again, is there anyone you could take with you to "fight your corner"?

You might want someone around anyway who can deal with the hospital so you can just be with your mum, although it would be understandable if you wanted to keep hold of that.



On a brighter note though: Helen - your suggestion about the jewellery is an lovely idea.

It made me think about my own box and realise that there's a story behind all of the pieces.

None of them have much financial value but that's far outweighed by their sentimental value smile



 Written by: _Clare_



Also, for a laugh, saw this on a MySpace post...

http://evil.berzerker.net/death_predictions.php



My death:

Clare: At age 49 you will become involved in revolutionary activities in Ecuador





Your mum would be so proud ubblol hug


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

yay,

:R"

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_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:Lol... I suspect so biggrin (my dad even more so rolleyes)


So then... they moved her onto a ward, which is grand... and she's doing fine... just utterly fed up with being in hospital. I hope they don't keep her there much longer, because just being in that place isn't good for your spirits.

I was going to kick up a fuss about the bed in the corridor thing... but my parents are Very against creating a fuss in hospitals (because 'the staff have enough to do') and it would have caused them to be more uncomfortable if I had... quite apart from the fact they wouldn't have been happy with me.

But it's all grand now anyways...

Off to see her tonight.

Amusingly, a music video we did last year is being aired tonight for the first time, at the same time as I'll be visiting her... so we're going to turn on the wee tv by her bed and watch it smile I think she might be amused.


Getting to the other side smile

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animatEd
animatEd

1 + 1 = 3
Location: Bristol UK
Member Since: 31st Aug 2004
Total posts: 3540
Posted:any chance of seeing this music video without a TV, clare?

Maybe by the magic of the Interweb?


Empty your mind. Be formless, Shapeless, like Water.
Put Water into a cup, it becomes the cup, put water into a bottle, it becomes the bottle, put water into a teapot, it becomes the teapot.
Water can flow, or it can Crash.
Be Water My Friend.

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_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:Nah, fraid not... at least, not until I stop being slack and upload all our wee tv moments biggrin

For those in Northern Ireland though (I'm sure there's some biggrin)... it's on BBC2 Northern Ireland, tonight, at 7pm. A music programme called Alt TV Rock School.

smile


Getting to the other side smile

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dream
dream

currently mending
Location: Bristol
Member Since: 15th Jul 2003
Total posts: 493
Posted:hug

He who fights with monsters might take care lest he thereby become a monster. And if you gaze long into an abyss, the abyss will gaze back into you.

Nietzsche

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_Clare_
_Clare_

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

Did you like the t-shirt?

smile


Getting to the other side smile

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_3C_
_3C_

Daywalker
Location: Dublin!
Member Since: 13th Feb 2007
Total posts: 215
Posted:Hey Clare, I'm sorry to hear about your Mom, I'm glad she got her own ward tho and hope they let her out of hospital soon hug

I'm afraid I missed your TV moment frown did it go down well in the ward?


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:ubblol

Yep... we had to wait through an hour of 'up and coming' local bands - who were mainly a bit poo, before we got to last year's winners, and our music vid.

It looks quite good... I'll post a link when it gets online... there's nice shots of Lisa, Andy, Arashi and Peter... from what I could see smile

Anyways... mum is doing ok... and we managed to have 'that conversation' about funerals and what to do at the end.

She was great about it... I was surprised. She's going to come down to the funeral home with me when she gets out, and we'll go over all the arrangements. Nice one smile

And I told her to have a word with dad sometime too... because he's going to be in bits.

I did ok. Welled up a bit at the end, but otherwise, ok...


Getting to the other side smile

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jo_rhymes
jo_rhymes

Momma Bear
Location: Telford, Shrops
Member Since: 10th Apr 2005
Total posts: 4525
Posted:Well done Clare! hug

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

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Gnor
Gnor

Carpal \'Tunnel
Location: Perth
Member Since: 31st Mar 2003
Total posts: 5814
Posted:We had what dad was going to wear to his funeral all sorted until we forgot about shoes. That was really hard having to take them into the funeral home.

hug hug hug to you and yours


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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Rouge Dragon
Rouge Dragon

Insert Champagne Here
Location: without class distinction
Member Since: 21st Jul 2003
Total posts: 13215
Posted:My old flatmate's mum has cancer and she was telling me that as a family they sat down to talk about the funeral. They apparently talk about it a lot. She said that it makes it easier for everyone. She even used to talk to me about it sometimes as well.

hug2


i would have changed ***** to phallus, and claire to petey Petey

Rougie: but that's what I'm doing here
Arnwyn: what letting me adjust myself in your room?..don't you dare quote that on HoP...

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_Clare_
_Clare_

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



So, we think my mum's starting to go yellow again.



Not sure... it might just be the light in the ward (or that could be clutching at straws).



If so, it means the stint that was put in last year to allow her bile duct to drain has moved... and we don't know what happens next.



It means she probably won't be out at the weekend. Which sucks, because there's someone I wanted her to meet.



Anyways... my imagination is running away with me again.



I suspect that because the chemo has been stopped, the tumour has started to grow again. And that may have pushed the stint out of the way, or stopped it working. (I seem to have a 'worse case scenario' mind)



I have no idea if they will do another op to replace it, or what happens next.



But she is very itchy, and that's upsetting for us all (it's not itchy like a rash, or a mosquito bite... it's like a combination of both, all over your body).



Anyways, my dad's imagination is running away with him too. I had him on the phone this morning, very upset, telling me he didn't want her to end her days 'scratching herself to death in a hospital'.



frown


Getting to the other side smile

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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:Would it be feasible to (when you know the time is close) and take her somewhere she (and you) would prefer her to die?

Sounds corny but something along the lines of watching the sunrise... Corny but definitely preferable to blinking fluorescent lights and beeping machines? An indignity even my own mother said she doesn't want...

hug hug hug


"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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_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:Hope so Dave... she wants to die at home, with my Dad.

Really, she wants the end to be painless.

We'll make it so, if we can

frown


Getting to the other side 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:Not sure if I already said this... but my grandaunt was admitted into a hospice. Which was just lovely. Really! She had a great big room which was decorated like a flat, and no strict visiting times, and a kitchen her daughter could use and all that, it wasn't home because she needed more care than her daughter could give (she went all psyched up and couldn't cope), but well... if she needs more medical care than you can muster, try and look into a hospice. The staff are very friendly, and there's more of them per patient than in a hospital. They take their time and are lovely. hug

"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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Gnor
Gnor

Carpal \'Tunnel
Location: Perth
Member Since: 31st Mar 2003
Total posts: 5814
Posted:Nana and Dad were in pallative care which was a much more calm and less clinical. The staff are calmer and its all about comfort. Having your loved one at home is a very personal decision and depends alot of the condition. Our pallative cares allow families to camp out in the room as long as needed.
It wa sinteresting in Ireland the way the families have the loved ones at home for veiwing prior to going to the church. That spun me out majorly!


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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Skulduggery
Skulduggery

Pirate Pixie Crew Captain
Location: Wales
Member Since: 12th Aug 2004
Total posts: 8428
Posted:Clare have you heard of Macmillan Cancer support? They can help your mum, you and your family to deal with all the pain and stress you are under now. Macmillan Nurses and Marie Curie Cancer care can help your mum to fulfil her wishes.

I have a friend who's father was helped through the end stages of liver cancer by these people. He was in a Hospice for some time, but requested to be allowed to pass away at home. They organised it all for him. Sorted out all the details of what he needed to make it possible. He past away peacefully at home in his own bed with his family there with him. Due to the Macmillan nurses organising everything, he didn't feel like he was placing an unfair burden on his wife by asking to be at home. They really did just lift a huge weight of the families shoulders so they had time and space to deal with the most important thing, saying goodbye.

I hope your mum gets her wish to go home. I hope your family gets more time to be together hug

We're here if you need us.... call any time hug


Feed me Chocolate!!! Feed me NOW!

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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:sorry to hear
the itchiness might be related to her pain medication...sometimes it's called a morphine itch...it depends on her medication and how often she gets it...i believe it is related to the "coming off"
i believe there is something that can be added to her medication regimin, if the doctors think that is where the itch is coming from
my grandparents all said they were going home and i think it was nice to know that family was always there


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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_Clare_
_Clare_

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

So at the end of last week, the doctors met up, did a few scans and decided my mum should get a new stint fitted. Hurrah! At least they didn't wait until she was really yellow.

She waited in one hospital all weekend, and late on Sunday night was transferred to another, and had a new stint fitted to gall bladder/pancreas (I think) early on Monday morning.

The itching is starting to subside, but will take a while.

Next, they're going to move her back to hospital one, where the doctors will try to do something with her veins... not quite sure what.

Her spirits are quite good, though, which helps.

What I've discovered this time round is that having to visit the hospital every single day is very draining, and expensive (fuel and hospital car parking).

I'm trying to organise workshops, gigs and finances... while simultaneously visiting mum every day (she says I don't have to, but if I say I can't, dad asks me 'why not' in a disappointed tone, so I do).

I'm just shattered and feeling really fed up with everything.

It feels like I'm not getting what I want in my life right now and I want to stamp my foot and cry. Grrr. ubbcrying

It's also making me a bit emotional and over dramatic - can you tell?! wink

Anyways, I'm sure it'll be fine in the end.

x


Getting to the other side smile

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fNi
fNi

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

*snugs*


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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jo_rhymes
jo_rhymes

Momma Bear
Location: Telford, Shrops
Member Since: 10th Apr 2005
Total posts: 4525
Posted:Of course you're feeling over dramatic and emotional. Anyone would be!
It sounds seriously exhausting- mentally, physically, emotionally AND financially.

Maybe having a good cry while punching some pillows might help? Bash bosh bish!! etc hug


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

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