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_Clare_BRONZE Member
Still wiggling
5,967 posts
Location: Belfast, Northern Ireland (UK)


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


Wild ChildSILVER Member
Star Trekker
1,733 posts
Location: Cheshire, United Kingdom


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


BansheeCatBRONZE Member
veteran
1,247 posts
Location: lost, Canada


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..."


faith enfireBRONZE Member
wandering thru the woods of WI
3,556 posts
Location: Wisconsin, USA


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


georgemcBRONZE Member
Sitting down facing forward . . .
2,387 posts
Location: Christchurch, New Zealand


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


_Clare_BRONZE Member
Still wiggling
5,967 posts
Location: Belfast, Northern Ireland (UK)


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


_Clare_BRONZE Member
Still wiggling
5,967 posts
Location: Belfast, Northern Ireland (UK)


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


newgabeSILVER Member
what goes around comes around. unless you're into stalls.
4,030 posts
Location: Bali, Australia


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....


BansheeCatBRONZE Member
veteran
1,247 posts
Location: lost, Canada


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..."


_Clare_BRONZE Member
Still wiggling
5,967 posts
Location: Belfast, Northern Ireland (UK)


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


georgemcBRONZE Member
Sitting down facing forward . . .
2,387 posts
Location: Christchurch, New Zealand


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


FireTomStargazer
6,650 posts

Posted:
hug

the best smiles are the ones you lead to wink


LazyAngelGOLD Member
Carpal \'Tunnel
2,895 posts
Location: Cambridge UK


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


SkulduggeryGOLD Member
Pirate Pixie Crew Captain
8,428 posts
Location: Wales


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!


jo_rhymesSILVER Member
Momma Bear
4,525 posts
Location: Telford, Shrops, United Kingdom


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.


The Tea FairySILVER Member
old hand
853 posts
Location: Behind you...


Posted:
hug

Idolized by Aurinoko

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

Bob Dylan


GnorBRONZE Member
Carpal \'Tunnel
5,814 posts
Location: Perth, Australia


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


mechBRONZE Member
Carpal \'Tunnel
6,207 posts
Location: "In your ear", United Kingdom


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!)

Step (el-nombrie)


BirgitBRONZE Member
had her carpal tunnel surgery already thanks v much
4,145 posts
Location: Edinburgh, Scotland (UK)


Posted:
I know it's hard to see any up-side in all this, but: Your mum has made it her goal to be around for that 30th anniversary, and she was. She may have had to go to hospital, but she's clung on so far when other people would've given up already. She's a kick-arse strong woman, and I tip my juggling hat to her. 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


_Clare_BRONZE Member
Still wiggling
5,967 posts
Location: Belfast, Northern Ireland (UK)


Posted:
ubbcrying

Thanks so much everyone...

Mech... Lol, what can I say dude... Mime's used to unnerve me, until I met Johnny Murphy from Dublin - he rocks... smile


Ok.

This is all quite awful, basically.

She's in the cancer ward in hospital, and we're trying to figure out what to do.

She can barely keep her eyes open, hasn't the energy to talk, and is uncomfortable (fortunately, not in pain).

She had an X-Ray this morning, which showed the tumour in her lungs, liver and some other places... her blood results are all over the place.

The drip that had been fitted started bleeding, and they couldn't stop it, so she has a huge bandage on her arm. The doctors will have to deal with that tomorrow.

Dad and I sat with her all day. It was fine... just talking nonsense, keeping in good spirits, and dealing with it.

The hospice nurse will come in tomorrow to help us decide the best course.

We could take her home, as planned, but it will be incredibly difficult to get her to the toilet and back (practicalities are important). Also, if she starts bleeding again, there's nothing we can do. But, she had originally wanted to go at home.

Alternatively, we can go to the Hospice, where she will receive all the good care and help... but we don't want to have to leave her... and it may mean she will never come home again.

Balls.

ubbcrying

hug

Getting to the other side smile


BirgitBRONZE Member
had her carpal tunnel surgery already thanks v much
4,145 posts
Location: Edinburgh, Scotland (UK)


Posted:
As for the toilet, I know it's not ideal, but couldn't you get a bedpan or something? Unless of course she'd be ashamed of that in front of her family, which is quite understandable.

I'm sorry I can't be of any more use to you, Clare, I really wish I could give you a proper hug frown Seems so silly making suggestions on a forum on how to best handle toilet problems shrug

Try and find out her opinion, whether it's more important for her to be at home, or have the best possible care. But please keep in mind how much you can or can't do for her - I think you've got a good point with your "what if she starts bleeding again", you might not actually help her by fulfilling her wish.

"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


_Clare_BRONZE Member
Still wiggling
5,967 posts
Location: Belfast, Northern Ireland (UK)


Posted:
smile

The toilet thing is just the best example of how difficult practical stuff will be at home...

I know there's nothing anyone can say or do right now, but the messages help and it's good to know people are thinking of you

hug

Getting to the other side smile


TheBovrilMonkeySILVER Member
Liquid Cow
2,629 posts
Location: High Wycombe, England


Posted:
hug - I'll replace that with a proper one next time I see you.

But there's no sense crying over every mistake. You just keep on trying till you run out of cake.


jo_rhymesSILVER Member
Momma Bear
4,525 posts
Location: Telford, Shrops, United Kingdom


Posted:
frown

hug

I don't know which is best either. Home or hospice? home or hospice?

Where would your mum rather be? What does she want to do? Or is she uncertain too?

hug xxx

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


newgabeSILVER Member
what goes around comes around. unless you're into stalls.
4,030 posts
Location: Bali, Australia


Posted:
Home hospice is the best. Proper care at home. But if there is no such outreach service where you are (they are rare) then listen carefully to what your hospice nurse says about what is possible at home and when it might be best to accept their round the clock help. (I worked in hospice for 6 years. Those nurses usually rock) One thing they are usually expert at is keeping people comfortable and dignified, while including family to the max.



One rotten thing about this stage is that whatever you decide, some part of you may later say 'we should have done the other' Cos we often make ourselves guilty rather than have the hell of seeing how powerless we are against the tidal wave. We fret about which sandbag we should have used when the tide is going to wash over all of it.



You are such a precious person to be sharing this time with us. Any decision you make with such love for you mum is the right decision. HUGE hugs and respect to you and your Dad too. And of course, all blessings to your mum for her total comfort...

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


georgemcBRONZE Member
Sitting down facing forward . . .
2,387 posts
Location: Christchurch, New Zealand


Posted:
ditto Gabe, you have such a neat way of putting things - much better than my blunt "cricket bat to the head" words! hug

And Clare, probably all I have for you is hug hug and more electronic hug, but sure wish I could give you a couple "in person" ones - this just feels sooooo inadequate. frown

Take care of yourself.

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


FireTomStargazer
6,650 posts

Posted:
ubbcrying hug I'm with you, Clare... hug

the best smiles are the ones you lead to wink


SkulduggeryGOLD Member
Pirate Pixie Crew Captain
8,428 posts
Location: Wales


Posted:
hug My heart goes out to you in this hard time babe. Helping loved ones make choices is always hard but it's even harder when you know it might be the last choice you help your mum make. Listen to everything the medical staff tell you, but also listen to what your mother wants. The way you have described her here leads me to believe she will know what is right for her.

Which ever choice is made, remember as long as you all show each other how much love and respect you have for each other, location isn't really all that big a deal. It's people that count not the place.

Feed me Chocolate!!! Feed me NOW!


newgabeSILVER Member
what goes around comes around. unless you're into stalls.
4,030 posts
Location: Bali, Australia


Posted:
 Written by: Skulduggery


Listen to everything the medical staff tell you, but also listen to what your mother wants.. It's people that count not the place.



Well said Skully! (Thanks for the nice words George. Personally I have always found Skully the word queen!)
I just differ a tiny bit.. location can matter; eg a hospital/emergency room, that is not designed for privacy, dignity and family. That is one disadvantage for people who choose to be at home at this stage, but don't have the support to go through the sometimes difficult situations that can arise. Sometimes family panic, call the ambulance etc and end up in weird places that are it hard to be. If people choose to look after someone at home, to the end, they have to well supported to know what is 'normal', and to stay there, even as their loved one passes. And know what to do after. This sort of stuff hospice nurses really know about. I am a huge advocate of home care... and of picking nurses brains!

Clare, I will write you a PM with some things it might be useful to ask...
hug

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


mechBRONZE Member
Carpal \'Tunnel
6,207 posts
Location: "In your ear", United Kingdom


Posted:
its coming clare, and you know what is coming.

you know you will come through it.

dont be scared, or afraid.

its natural, and you are dealing iwth it

Step (el-nombrie)


DurbsBRONZE Member
Classically British
5,688 posts
Location: Epsom, Surrey, England


Posted:
frown hug

Thinking of you gorgeous lady.
You're doing grand hug

Burner of Toast
Spinner of poi
Slacker of enormous magnitude


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