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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

Maybe...

I'd kindof like to be hugged on a more regular basis though.

smile


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:Move to Southampton... wink

"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:ubblol

Might make hospital visits difficult smile


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:move to the US.... biggrin

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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Neon_Shaolin
Neon_Shaolin

hehe, 'Member' huhuh
Location: Behind you. With Jam
Member Since: 13th Jul 2005
Total posts: 6120
Posted: Written by: _Clare_


ubblol

Might make hospital visits difficult smile



I can arrange for someone to be kneecapped... ubbangel


"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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faith enfire
faith enfire

wandering thru the woods of WI
Location: Wisconsin
Member Since: 27th Jan 2006
Total posts: 3556
Posted:it's fine and natural and it is how your mind decided to cope
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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BansheeCat
veteran
Location: lost
Member Since: 29th Jul 2005
Total posts: 1247
Posted:Sending you lots of hugs...a million or more!

I found that after the stuff I went through with family dying, and then me being in the hospital of and on so long myself, that now I have a real serious aversion to going anywhere near them. I associate them with a lot of pain emotion, confusion, exhaustion, arghhh. Hate being there. Hate it!!!!

When MK had her surgery,we all went with her. I spent a good hour vomitting in her bathroom, some kind of reflexive response completely beyond my control. The next day, tried again, and I recall walking into the room-- then woke up two hours later... Apparently I just came in, said hi, and laid down on the side bed and fell asleep! Weird.

Anyways, If there is a point in all this it is just not to push yourself too hard, and to be gentle with your expectations. Give yourself a break too, and know that your dad also loves you and will manage to understand if you need to take a day off here or there. So will your mom. And you can call, or in some other way connect on those days.

Illness is a challenge to what we want. It is a rude awakening to our fragility, a recognition that things are not always going to go how we want, and worse yet, we may not get what we want, or even what we need. But we do adapt, in time.

Your desires, wants, needs, moods, feelings, thoughts, body/health, mental and physical-- all of it- are important. You can find a way to honour and cherish your self, as well as your mom and your family.

Loads of love your way,
xoxox
a


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

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Gnor
Gnor

Carpal \'Tunnel
Location: Perth
Member Since: 31st Mar 2003
Total posts: 5814
Posted:Move to Perth... hug hug hug hug hug

Have a huge tantrum at something else.

Have a huge rant on msn to people.

Can you park elsewhere and get public transport to hospital.

hug 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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Skulduggery
Skulduggery

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

We need to get you a teleporting machine! You could have your own Scottie to beam you up wink


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:Then we could all have a Clare 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

Delete

_Clare_
_Clare_

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

redface

Thanks... I've always wanted a teleporting machine... I wonder what it's like to never be late for stuff rolleyes

My own Scottie, eh? Haha. He would have to have a funny accent.
And be able to say 'Cap'n' with a silent 'tai'.

smile

(my dad made me watch loads of Star Trek when we were growing up (and lots of war films, and James Bond)... I always thought Mr Spock was strangely attractive. Capn Kirk was much too smug)


Getting to the other side smile

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_3C_
_3C_

Daywalker
Location: Dublin!
Member Since: 13th Feb 2007
Total posts: 215
Posted:(Capn Kirk always got the girl too!)

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:(and in the final off-topic post in this thread smile hopefully biggrin )

Yes! and why?! ubbloco

If I had been the cute little alien girl in silver spangly trousers and unfeasibly tight zipper top, I would have made straight for the guy with the pointy ears.

Y'see... no need for words, and he would have known exactly what to do biggrin


Getting to the other side smile

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CaffeinatedKatie
CaffeinatedKatie

Teacher, Dancer, Artist, and General Smartass
Location: Portland, OR
Member Since: 29th Jan 2005
Total posts: 149
Posted:It makes me proud to see the support of all these people. I wish I'd had a network like this when my mom was diagnosed with cancer. I wish I knew enough to offer medical-ish ideas for you, but I've got nothing. What I can say is, positivity helps. A sense of humor, however sick, helps. That was something that I truly believe helped my mom a lot. She told me that when she was driving home from the doctor after being diagnosed with breast cancer, she thought "Dammit, I JUST got a bra that fit!"
Also, you clearly have a LOT weighing on you. You need to take time for yourself, too. Maybe it's a half hour alone meditating every day, maybe you just take one day to go out and do whatever comes to mind (but no errands, no responsibilities, and alone). Call it a 'mental health day.' You deserve it.
I'm sending this message with hugs and hope.


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_Clare_
_Clare_

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

So then...

Mum is still in hospital.

She was moved to the ward of her consultant, and she had a meeting with him on Monday.

It seems that now the chemo has stopped, the tumour is growing much faster... causing the new blockage that required the stint.

She became much more yellow, but it has finally started to ease (along with the itching).

He reckons she has three months.

frown

But that's what we expected from last year. The end of June.

My parents are keeping in good spirits... considering. But she's been in that hospital too long now... it's coming up on three weeks (I think... the days tend to merge slightly).

Hospital wards are so close and warm and smelly. She needs to get outside into the fresh air, and it's starting to annoy her, sitting in the one place.

She can't really concentrate on doing anything, so she's getting lots of visitors instead, which cheers her up.

Anyways, hopefully she'll be out soon.

xx


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:I think your Mum should accompany you to BJC. That way, We all get the pleasure of your comapny, and your Mum gets to have a wicked time.

ubbangel

Sending you loads of Hugs. Hope I see you again real soon.


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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faith enfire
faith enfire

wandering thru the woods of WI
Location: Wisconsin
Member Since: 27th Jan 2006
Total posts: 3556
Posted:just make sure no one has colds or such...her immune system is probably shot

could you take her wheeling around outside the hospital?


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

Delete

fNi
fNi

master of disaster
Location: New York
Member Since: 8th Mar 2004
Total posts: 3354
Posted:hug hug hug 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:Clare, I was just thinking about how in the last few days as my father was dying, and he was aware his time was short, he wanted to have a "last taste" of various things that he loved... Certain fruits, chocolates,songs to listen too, textures, stories etc. But he was in reality too ill already to enjoy some of it. we should have started earlier! ( like maybe all our lives)

I was just thinking maybe your mom would enjoy being surrounded by favorite sensations and expereinces, started sooner, so she can still appreciate them?


"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:smile

Good plan Andrea... I shall write a list biggrin
(One thing I can actually do rolleyes)

Not sure BJC is really her thing Ed... nice idea though biggrin


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: Written by: _Clare_


Good plan Andrea... I shall write a list biggrin
(One thing I can actually do rolleyes)




ubblol
Eventually, after you've dithered about it for half-an-hour or so wink

hug


Burner of Toast
Spinner of poi
Slacker of enormous magnitude

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_Clare_
_Clare_

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

Puh.

Toaster.

I'll have you know I'm very good at writing lists tongue


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:Like I don't already know rolleyes
"What do you want for breakfast Durbs? Here's a list of what I've got - then you can choose from this list what you'd like to drink with that. Afterwards, we can do anything on this list - then I've got to tick a couple of jobs of my job list, before going over to the drummers house as I've got to give them a list of stuff to do" ubblol

You're lovely wink


Burner of Toast
Spinner of poi
Slacker of enormous magnitude

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_Clare_
_Clare_

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

Stop mocking me!!!

tongue

hug2


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:Durbs has a list of your list..thats impressive

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

Delete

fNi
fNi

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

is there a master list?


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

Delete

Gnor
Gnor

Carpal \'Tunnel
Location: Perth
Member Since: 31st Mar 2003
Total posts: 5814
Posted:Im sure there is a master plan

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

Delete

PyroWill
PyroWill

HoP's Barman. Trapped aged 6 months
Location: Staines
Member Since: 4th Aug 2004
Total posts: 4437
Posted:Clare, I've kept quite quiet on this thread for far too long, I haven't ever posted in it since I have had a lot of trouble thinking what to say.

But I don't want to be silent anymore, even if I can't think of anything useful to say.

I hope what time your mum has left is spent with those that are close to her, she is very lucky to have such a devoted family.

I'm sure she's very proud of you, you've had more strength this last year than anyone else I know.

Wishing you, her and the rest of your family all the best.

Love Will
hug


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: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



So then...



Mum started to get more and more yellow after the stint was fitted last week... which was a bit worrying...



Her belruben (something in her blood) was 175 - and it's supposed to 35.... but, over the last few days it's been dropping steadily, to 159, to 133, and to 115 yesterday... hopefully it'll keep going smile



Then, she's off to another hospital to get the bloodclotty fingers sorted out (the thing that took her into hospital in the first place)... and then, finally... and hopefully... she'll be home.



She really needs to get some sleep. And some fresh air. And to spend some time with dad without old people coughing their lungs up in the next bed...



Fingers crossed she'll be out by the end of this week...



biggrin


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:Hi Clare!

Finally got back home, thanks again for being such a lovely host!!! hug

Good luck for your mum getting to go home soon! I'm sure that'll give her a big boost.

For the medical stuff: bilirubin is what becomes out of "heme" (a part of hemoglobin, the protein that carries the oxygen in your blood) when it gets old and is degraded. Usually you'd get rid of it through urine or faeces, they're yellow/brown because of it. Also bruises turn green and yellow because the blood in them is degraded to biliverdin (green) and then bilirubin. So if bilirubin doesn't get out of the body because of the organs not working so well, it accumulates, and your skin and eyes appear yellow.


"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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