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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

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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mech
BRONZE Member since Jun 2003

mech

Carpal \'Tunnel
Location: "In your ear", United Kingdom

Total posts: 6207
Posted: Written by: Durbs


 Written by: _Clare_


I'd quite like a small, fat, bald-esque, toothless dog that only pees in the appropriate places




woof?

aka Mech? wink



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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
Posted:*Pats Mech*

Lol... smile


So then...

With lots of reservation, I've decided to go to UberParis.

Mum and most of my friends think I should go - with the main argument being 'it's only two hours away if something happens'.

Hmmm.

I've had a rubbish few days again.. I'm really tired and looking forward to seeing a few people in somewhere relatively warm and mildly exotic, but as with most things at the minute, I'm not sure...

If something did happen when I was gone, I'd feel guilty about it forever. Also... it's one thing embarrassing yourself on a public forum with open emotion and grief (don't say it George tongue )... but quite another being upset in person, when people are trying to have a good time.

As usual, most of me would like to sit in a dark room and hide til this is over.

Mum seemed grand when I visited yesterday... in good spirits and bimbling along. Dad is getting back pain... hmm, wonder why!!

I'll miss Father's Day though... which isn't good.

Meh... anyways... I have a million things to do today.

Have a good weekend whatever you're up to

x


Getting to the other side smile

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mech
BRONZE Member since Jun 2003

mech

Carpal \'Tunnel
Location: "In your ear", United Kingdom

Total posts: 6207
Posted: Written by: _Clare_


*Pats Mech*

Lol... smile






*insert joke about humping legs*

wink

have fun clare, and ill talk to you over the weekend honey ok?

hug


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Spanner
BRONZE Member since Feb 2003

Spanner

remembers when it was all fields round here
Location: in the works... somewhere..., ...

Total posts: 2790
Posted:I'm really glad you've decided to go!
I know how hard you've been working lately and you deserve (more than) a few good days to balance the rubbish ones out smile
Have a good weekend hug


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

yay,

:R"

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
Posted:hug

thanks m'lovelies... wish you were going too!

Mech... call me tonight after work? It'll be expensive to call Paris!

xx


Getting to the other side smile

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mech
BRONZE Member since Jun 2003

mech

Carpal \'Tunnel
Location: "In your ear", United Kingdom

Total posts: 6207
Posted:ok honey....

its prob expensive you call you cross network, over the water anyways....


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faith enfire
BRONZE Member since Jan 2006

faith enfire

wandering thru the woods of WI
Location: Wisconsin, USA

Total posts: 3556
Posted:have a good weekend, and this may sound callous but it was the same when my grandfather was ill and my friends invited me out
my parents asked me, even if i was there what was i going to do if something did go wrong. They made their point, and I went and had fun

have fun


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_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
Posted:smile

That's what mum says...

xx


Getting to the other side smile

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mech
BRONZE Member since Jun 2003

mech

Carpal \'Tunnel
Location: "In your ear", United Kingdom

Total posts: 6207
Posted:as long as you still need hugs form some of us when you get back, thats ok, else i fear we will all be obsolete wink

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faith enfire
BRONZE Member since Jan 2006

faith enfire

wandering thru the woods of WI
Location: Wisconsin, USA

Total posts: 3556
Posted:oh no i'm turning into your mother smile

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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georgemc
BRONZE Member since Oct 2006

georgemc

Sitting down facing forward . . .
Location: Christchurch, New Zealand

Total posts: 2387
Posted: Written by: _Clare_


Also... it's one thing embarrassing yourself on a public forum with open emotion and grief (don't say it George tongue )...


Say what?! shrug
was it supposed to be spank ? Or was it supposed to be about me embarrassing myself here all the time?! or something else?
ubblol ubblol ubblol

Enjoy Paris *repeats order*
And if you get a chance, have at least one of those pastry things with the chocolate inside they have at breakfast ("petite pain" is it??) - at least one for me, you can have as many as you like! wink

George


Written by: Doc Lightning talking about Marmite in Kichi's Intro thread

I have several large jars of the stuff. I actually like it... a little. And don't tell anyone I admitted to it.
grin

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
Posted:Ok then...

Quick post as an update...

Wrote massively long letter to Mum before I went to Paris (thanks for that Mech... tis good to receive a correctly timed kick up the arse).

It feels better to have said all that important stuff, even though mum and I haven't actually talked about it yet.

UberParis was great, but it did take a good couple of days to let everything go and start enjoying it... fair play to Durbs and all my lovely friends for their patience smile

Went to see mum when I got back last night... she's doing ok... still slow, but bimbling along.

However, I need to be there more... help Dad with dinner and lunch and household stuff... he's absolutely exhausted doing every thing.

Problem is, I'm working between now and Sunday so just can't be there frown

She understands, but it's frustrating to be torn between two places. Argh.
Either to my mum, where I should be - or to work, so I can pay bills.

Anyways... thanks to UberParis and seeing my friends, at least I've got some strength back and everything isn't quite so dark... it'll be ok.

smile

x


Getting to the other side smile

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Wild Child
SILVER Member since Sep 2004

Wild Child

Star Trekker
Location: Cheshire, United Kingdom

Total posts: 1733
Posted:hug hug

'The last rays of crimson on the spindle tree as the cerise fruit splits and reveals its orange seeds in a gloriously clashing colour scheme no-one would ever dare to wear'
Euonymous Europeus

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BansheeCat
BRONZE Member since Jul 2005

veteran
Location: lost, Canada

Total posts: 1247
Posted:Clare, maybe it is time to talk to your mom and dad about bringing some in home care. Sounds needed if your dad is getting wiped out... You can act as care giver, but then youmight need to talk about finances with them, to see if they can financially support you in doing that so you are not being torn into peices trying to do everything...

Glad Paris was a treat, and I bet writing your mom a letter is a fabulous move on your part!

Been thinking of you, wish you were here
xoxox
a


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

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faith enfire
BRONZE Member since Jan 2006

faith enfire

wandering thru the woods of WI
Location: Wisconsin, USA

Total posts: 3556
Posted:(home care helps the family enjoy the time they have...they aren't stressed, and get to have more personal time...)

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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Spanner
BRONZE Member since Feb 2003

Spanner

remembers when it was all fields round here
Location: in the works... somewhere..., ...

Total posts: 2790
Posted:Either way, talking of financial support: has your mum applied for Disability Living Allowance under the special rules?

If she gets that then your dad/you can apply for Carer's Allowance .

There's no dictation on how you should spend either and it could fund extra help or getting around more comfortably for your mum, or allow you and your dad to take some time off from other work yourselves if possible.

Let us know if you haven't as I think there are a few people here who have applied and I'm applying for Roo now as well so we could help you out.



I was wondering if you were back yet so I'm glad to hear the weekend away did you good hug


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

yay,

:R"

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georgemc
BRONZE Member since Oct 2006

georgemc

Sitting down facing forward . . .
Location: Christchurch, New Zealand

Total posts: 2387
Posted:hug Clare.
Glad you enjoyed the weekend.


Written by: Doc Lightning talking about Marmite in Kichi's Intro thread

I have several large jars of the stuff. I actually like it... a little. And don't tell anyone I admitted to it.
grin

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
Posted:smile

Thanks m'lovelies...

Good to hear from you Andrea... and thanks... hug

I think some home help would be good... I also think having an oxygen bottle in the house would be good too (just in case..) but Mum says no.

(her doctor also said no on the oxygen thing, which I found a bit odd)

Anyways... I think she's trying to keep 'normal' for as long as possible - and things like other people in the house and additional help suggests there 'may be something wrong' - even though we all know there is.

I know it seems like she's just ignoring it... but maybe that's a good thing.

I think she (and my dad and I) need to believe that she's not going to die just yet... for as long as possible... so we'll keep going like this until it becomes even more obvious that we need help.

Accepting anything else would be wrong.

Will suggest the allowance thing... but not sure they could be bothered with the paperwork! smile

grouphug


Getting to the other side smile

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
Posted:So then...



Another week's gone by and again everything is in total change.



Mum was struggling for breath last week, and finding it difficult to do things... of course, that gets worse.



Last Thursday I left home to start a few days working round the country... I feel bad leaving... but have to to pay the many and frequent bills.



Thursday was a good-ish day. Quite emotional for lots of reasons, but generally good and felt positive.



Friday was the flipside... Horrendous day, which kept getting worse... but it finished at my friend's house - we sat up late talking alot about death, life and change. Which was good.



I'm trying to use this difficult time with mum to also affect some positive change in my own life, and he really helped to point out some things - why patterns keep repeating in my life, why I keep making the same mistakes and what I'm going to need to do to stop that.



It feels like a huge and unpleasant task... but needs to be done at some stage in my life... and I guess now is as good a time as any.



I was exhausted all day Saturday, after Friday's events, but finally got back to Belfast, finished the shows and crawled back home.



Mum sounded tired on the phone.... she said she had been shaky and short of breath. As always, she said she was fine.



I spent most of Sunday at my parents, doing stuff in the house. Mum seemed ok... tired, frustrated, but still keeping strong. She needs to close her eyes alot, because it's sore to keep them open. It's also tiring for her to talk much.



She has more ulcers in her mouth, and her legs and stomach are swollen. Her breathlessness is frightening at times... and apparently it's worse in the morning, when I'm not there (this might be changing soon).



Dad is still doing a million things to distract himself... mum and I both know that he's going to be exhausted at the end of this... but she thinks he'll be ok.



I had a friend visit last night though. With wine.... smile which was good.



Today was supposed to be my parents 30th wedding anniversary... it was the target mum had set for the last year... that she wanted to make.



And she did... smile



They had a dinner planned... they were going to go to the place they went for their wedding dinner 30 years ago...



But, mum's doctor was worried about a blood test and took another one... Her INR (blood thing/thickness of blood?) was 9.7 (it's supposed to be 2). This meant her blood was like water and couldn't have clotted.



Also, her breathing was much worse this morning - it really frightened my dad.



So, instead of going out to dinner, mum is back in hospital, and my parents had to spend their anniversary night apart ubbcrying



She's getting lots more tests, possibly another blood transfusion... but we'll have to wait and see. Again.



I travelled up with her in the ambulance this afternoon. She was sooo frustrated to let my dad and their friends down over dinner. She is trapped inside a body that progressively doesn't work.



But... on the ambulance trip we talked about the letter I wrote to her. She said she loved me too... in a roundabout way smile



So I'm just home now... writing this and wondering what's most important on my To Do list.



It's so hard to celebrate life and living when you're preoccupied waiting for death.



Best wishes to you all



xx


Getting to the other side smile

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newgabe
SILVER Member since Mar 2005

newgabe

what goes around comes around. unless you're into stalls.
Location: Bali, Australia

Total posts: 4030
Posted:This sounds like such a roller coaster of a week. Thinking of you from over here and sending many hugs to you. I don't have time to write anything more profound than that right now... but GOOD ON YOU for going to UberParis, and writing that letter, and taking the time to learn about your life and choices from this huge challenge...and loving your parents, and hanging in there and ALL of it, beautiful lady hug

.....Can't juggle balls but I sure as hell can juggle details....

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BansheeCat
BRONZE Member since Jul 2005

veteran
Location: lost, Canada

Total posts: 1247
Posted:It is very hard, but one of the gifts Death offers is the appreaciation for Life, and for the moment.

"Surrendering" ( the awareness we are not in control" is another of the things death makes us realize. Our bodies are transient, they dont always work or look the way we want them too-- and we need to accept that.

I found that bit extremely frustrating, and can completely understand your moms annoyance at not making a party she fully intended to be at.

Though hard, it may be there is no better time to celebrate Life than while preoccupied with Death!

You seem to be finding space for that, at least a little, and a huge hug to you for sharing the expereince!
xoxo
a


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

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
Posted:frown



Well... no better news today.



She had an X-Ray this morning to show the state of her lungs...



I only spoke to Dad briefly this morning (who was understandably upset), but it appears the tumour has spread to her kidneys, liver, lungs and a few other vital organs.



She may have to go to the Marie Curie Hospice after all... she might not get home again this time frown frown



Going to hospital this afternoon.



Thanks Gabe and Andrea... muchly appreciate your words hug



x


Getting to the other side smile

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georgemc
BRONZE Member since Oct 2006

georgemc

Sitting down facing forward . . .
Location: Christchurch, New Zealand

Total posts: 2387
Posted:Clare - big big hug for you. Don't know what to say to make it any better either sorry frown .
It sounds like it is coming up to crunch time where you find out if all the "training" you've been doing will pay off. That probably sounds callous but I hope you know my thoughts and wishes (as for all of us) are with you and trying to send you strength to keep going.
You know you can "touch your nose" so hang on in there lovely lady.
hug hug hug


Written by: Doc Lightning talking about Marmite in Kichi's Intro thread

I have several large jars of the stuff. I actually like it... a little. And don't tell anyone I admitted to it.
grin

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FireTom


Stargazer


Total posts: 6650
Posted:hug

the best smiles are the ones you lead to wink

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LazyAngel
GOLD Member since Jul 2004

LazyAngel

Carpal \'Tunnel
Location: Cambridge UK

Total posts: 2895
Posted:hug

Because ActiveAngel sounds like a feminine deodorant

Like sex, I'm much more interesting in real life than online.

'Be the change you want to see in the world around you' - Ghandi

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Skulduggery
GOLD Member since Aug 2004

Skulduggery

Pirate Pixie Crew Captain
Location: Wales

Total posts: 8428
Posted:You know where Jon and I are if you need us hug Just call. Any time of night or day. Don't sit there thinking that you can't because we will be sleeping or angry at being woken up, because we won't. If you need an ear to listen, we're here.

Feed me Chocolate!!! Feed me NOW!

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jo_rhymes
SILVER Member since Apr 2005

jo_rhymes

Momma Bear
Location: Telford, Shrops, United Kingdo...

Total posts: 4525
Posted:I don't have any words of comfort Clare.

I'm so sorry your mum's health is declining so rapidly, I wish your parents could have had a lovely anniversary.

I am your friend, always, and I will always be here for you no matter what.

I know that is no consolation for what is happening in your life right now.

I wish you strength, courage and hope for the times ahead.

hug


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

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The Tea Fairy
SILVER Member since Jul 2004

The Tea Fairy

old hand
Location: Behind you...

Total posts: 853
Posted:hug

Idolized by Aurinoko

Take me disappearing through the smoke rings of my mind....

Bob Dylan

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Gnor
BRONZE Member since Mar 2003

Gnor

Carpal \'Tunnel
Location: Perth, Australia

Total posts: 5814
Posted:sshhiitttttttt and other words.

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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mech
BRONZE Member since Jun 2003

mech

Carpal \'Tunnel
Location: "In your ear", United Kingdom

Total posts: 6207
Posted:you wrote the letter i suggested, you are making to do lists, which i asked you to do to balance out you day

you are preparing for the coming dark, and you are trusting in friends.

you are strong, and you should not be ashamed of who you are, but strive for who you want to be...

dont be sorry for being upset, dont run from what you feel.

be who you are, and no more, no less. people may like it, others may not, but you have to live in your skin.

now

cos i cant give you a hug, and i have nothing more to say, i though that i would buy you a mime...


Non-Https Image Link


but i thought it would be fun to stick a large club up his arse, hence the expression smile (dam mimes!)


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