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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast

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_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast

Total posts: 5967
Posted:Well...

As expected, today's scan results didn't go so well.

The tumour is growing again in her pancreas.

As a result, they've stopped the chemo, since it obviously isn't working.

And now there's nothing that can be done.

However, it doesn't actually appear to have spread to her lungs (yet). There are a few bloodspots in there, but apparently they aren't tumours.

The doctors didn't give her months, they just said they didn't know, but that she will probably lose her appetite eventually.

She's doing grand... she sounded bouncey on the phone, and (as usual) had visitors to the house to take care of.

Dad is a bit sad, but doing ok.

And I'm remarkably ok. Perhaps this is because it's my first day in a new job and I don't really want to be sobbing at my desk (where I'm writing this). Perhaps it's because I did all my crying on Monday.

But it's probably because my mum said: 'Now Clare, we all knew this was going to happen." And when faced with that kind of logic, what can you do?

Le sigh.

meditate


Getting to the other side smile

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Neon_Shaolin
GOLD Member since Jul 2005

Neon_Shaolin

hehe, 'Member' huhuh
Location: Behind you. With Jam

Total posts: 6120
Posted:Not even gonna pretend to come up with something new to say because there is nothing you can say. So I'm gonna be inappropriately lazy and quote what i said earlier but it still stands... Thrown in a few more of these... hug hug hug

 Written by: Neon_Shaolin


Sorry to hear that Furry Purple. No one to have to go through this. It is a sad fact that we are in the middle of a cancer epidemic - a sign that modern life and humanity isn't as mutually beneficial as we like to think.

It is a case of 'hope for the best but prepare for the worst'. In both cases just be there for for you mum like she has done for you in raising a fine daughter. Be there for her if she has to go through chemo and in the worst case be there for her if there really is nothing you can do. That's all you can do really.

In terms of alternative therapies my friend's dad found that drinking green tea managed to lower his *something (I can't remember what)* count that I think he's making a full recovery. I don't want this to give you false hope but it may be worth trying. I've also read that certain nuts have good cancer fighting properties. The benefits of macrobotic diets and organic vegetables have also been brought up.

I fully agree with Jo about 'Laughter being the best medince' and we know that mood can psychosomatically affect the body. That in the same way that a pessimistic mood can damage the body, a more optimistic mood could have the potential to affect the body in a positive manner.

In the end, just be there for you mum. If its terminal, make her life worth living, if there's a chance she can recover, make her life one worth fighting for. 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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Antti_Everything
GOLD Member since Aug 2003

Antti_Everything

addict
Location: Jrvenp, Finland

Total posts: 446
Posted:I'm glad you're doing ok.

Preparing for the inevitable makes it easier. When my father died it helped me a lot that he was ready for it and I accepted it. And the day he slept away was also full of laughter with my family and talk about good memories and not just sadness. It will be hard because you always miss the one you lose but still I can be happy about all the good times we shared with my father.

I wish strenght to your whole family to go through these hard times. Anytime you need me call me.

A. hug


Point your toes.

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast

Total posts: 5967
Posted:Thanks Dave and Antti
xx


Getting to the other side smile

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Gnor
BRONZE Member since Mar 2003

Gnor

Carpal \'Tunnel
Location: Perth

Total posts: 5814
Posted:Treasure the time you have left and perhaps start to assemble your memories now. Talk about the wealth of knowledge that only your mum has and you will want to know in 20 years time. Like family history and whose in that old photo and where family is from. The memories of your childhood that only she has so you can share them with your kids. Use talkie tapes too if she would be comfortable so you arent scribbling or making your mind work. Lots of MP3 players now have recording facilities.

Start videoing family occasions..

It was about 3 days from when I got the " Hurry up and get up here" call to Dad passing away and he changed so drastically in that time. From sitting up puffing a hit and laughing to palliative care. I spent the next week assembling a photo album so that the memory I have of Dad was not only the man in that bed but the man that was in life for 37odd years.

I think you have talked about complimentary medicine before and friends with cancer have said Reiki and reflexology gave them relief.

My thoughts and hugs are heading your way

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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fNi
GOLD Member since Mar 2004

fNi

master of disaster
Location: New York

Total posts: 3354
Posted:*snuggles for clare* 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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Ade
SILVER Member since Mar 2001

Are we there yet?
Location: australia

Total posts: 1897
Posted:hug

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Skulduggery
GOLD Member since Aug 2004

Skulduggery

Pirate Pixie Crew Captain
Location: Wales

Total posts: 8428
Posted:Hey gorgeous lady hug

Your mum sounds very cool and as if she has got her head around all this!

I have no advice to give you. All I can offer is an ear if you need one and lots of love for you and your family. You know where Jonny and I are if we can be of any help. kiss

hug2


Feed me Chocolate!!! Feed me NOW!

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast

Total posts: 5967
Posted:Thanks... and Gnor, you're right... I've been putting that off massively... guess it's time to do something...

Hmmm...

Not sure if mum's ready for it yet though.


Getting to the other side smile

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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:If she's not ready, maybe you should just lend an ear to what she wants to talk about for now. I'm sure you do already though smile



I must say that hearing that she's taking care of the visitors rather than vice versa made me smile. She still sounds as determined to keep an eye on everything as much as she ever did!



Having said that, I can understand how you may feel about her being the one among you all who seems to find it easiest to remain positive. Knowing that it was going to happen, as she said, doesn't necessarily make it any better for you, but she sounds as if she's ready to go.



Even if she's not, from what you've told us of her strong personality, I hope that you can take some consolation from me when I say that I really don't think she's going to go until she's ready.



Reading what I've just written, I hope you don't think I've jumped to confusing or tactless conclusions about your feelings, or those of your family, because there's no wrong way for you to feel.



I hope you think there are lots of people who love you very much and who are happy to listen and give advice when you need them to though, because that is very much the case hug


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

yay,

:R"

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faith enfire
BRONZE Member since Mar 2017

faith enfire

wandering thru the woods of WI
Location: Wisconsin

Total posts: 3556
Posted:i'm sorry to hear this, i've been through it a number of times with my family, it never gets easier
enjoy your time now because it is time with her not because she is going to be gone because that just puts a pall on it all
do you guys have the cancer center where you are, it is an option before moving into the grieving phase, and get a last opinion...just a thought


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

Total posts: 5967
Posted: Written by: Spanner


Knowing that it was going to happen, as she said, doesn't necessarily make it any better for you, but she sounds as if she's ready to go.

Even if she's not, from what you've told us of her strong personality, I hope that you can take some consolation from me when I say that I really don't think she's going to go until she's ready.




As always beautiful lady... you're spot on hug2

Thanks xxx


And faithinfire... thank you muchly... but I think that suggesting a cancer centre would be like her admitting something is wrong and she needs help... which I don't really think she wants to do.

I think her attitude is... I've got this thing, which is going to kill me, so I might as well enjoy life and not make a fuss, until it happens.

Which is pretty much typical of my mum biggrin

rolleyes


Getting to the other side smile

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast

Total posts: 5967
Posted:Quick update:

Yesterday got the phonecall from Dad to say he had to take her to the doctors... she's getting bloodspots in her fingers.

(Meanwhile, in the background, Mum's shouting 'I'm ok, there's nothing to worry about' rolleyes)

Heading round there now for a wee visit.

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, and be killed.

Perfect... I think I might make it so biggrin


Getting to the other side smile

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Skulduggery
GOLD Member since Aug 2004

Skulduggery

Pirate Pixie Crew Captain
Location: Wales

Total posts: 8428
Posted:The more you post about your mum the more I like her! smile

Feed me Chocolate!!! Feed me NOW!

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fNi
GOLD Member since Mar 2004

fNi

master of disaster
Location: New York

Total posts: 3354
Posted:*snuggles for you and your family* 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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faith enfire
BRONZE Member since Mar 2017

faith enfire

wandering thru the woods of WI
Location: Wisconsin

Total posts: 3556
Posted: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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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast

Total posts: 5967
Posted:Hmmm...



So then, visited my parents last night to start on 'The Book'.



As I suspected, mum didn't want to do it... I had to more-or-less sit with her to get her started... she considers the whole thing like admitting the end.



And that's a problem.



Last night was a big shock for me... I thought my parents, even though they act as though nothing is wrong, were talking about the end between themselves - making decisions, and at least trying to reach a peace.



But nope.



Last year, Doc Lightning wrote a very long and muchly appreciated PM to me about my mum... (with his permission, I may copy some of it here?). It was very blunt, in a good way, and explained that we should deal with important questions, such as, what do we do when she gets really sick..., and start dealing with funeral arrangments in advance.



Anyways, on the assumption they had been talking about it already, I showed the PM to my dad last night... it seemed to take him by surprise and he admitted they hadn't talked about it at all. They seem to have blocked out what is about to happen! He said 'did you see the time frame in that letter?' And I think that's what upset him most... Doc suggested (realistically) a year... and a year is coming up very soon... she is also getting worse, fast.



frown



My dad, who has never, ever been emotional before this, ended up crying in front of me... and I realised how scared they are frown



Anyways, the night ended well, we were all laughing and joking... and mum was telling tales from 40 years ago, when she took a boat from Southampton to Australia (took her 4 weeks! cos you didn't fly in those days wink ). She stayed over there for three years... in the days before tourism really took hold.



My mum is a Christian, and has always been very well behaved, but she told tales of the boys who used to chase her... including the French guy on the boat from Miami 'who was the head of two turf and a daisy and said I reminded him of his girlfriend' ubblol



Apparently, when the girls she was travelling with saw him approaching, they used to run and hide smile



Anyways... I'm going back there on Friday afternoon to do more book stuff, and I'll bring my dictaphone this time. I'm also going to sit down with my dad and mum and ask the questions that need to be asked. (Doc... if you can, and if you have the time, can you give me a list of things I should ask? That we should be prepared for?)



My brother arrives home for the weekend on Friday night, so that should be a good distraction for her afterwards.



Then, I'm going to make the arrangements with the Funeral Home this week. I suggested it to my dad, but I could see by his face he was completely horrified by the suggestion. I'll do it. At least it'll be done.







This thread is probably going to get rather difficult to read in the next few weeks and months... so be warned... but I'll keep writing here, because it's good for me...



And finally, thank you very much to m'lovely friend who I spoke to last night... you are a rock, and I appreciate it (as opposed to 'you rock' which you also do too biggrin)



xx


Getting to the other side smile

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Helen_of_Poi
SILVER Member since Apr 2004

Helen_of_Poi

lapsed spinner
Location: Dublin, Ireland

Total posts: 412
Posted:Hi hon hug

The power of denial is incredible. I remember my mother (who was already riddled with cancer at this stage) casually telling me that the doctors had found a "thing in her head", so I asked, "so you mean a brain tumour?" to clarify, and she went white, and said, that she supposed that was what they meant. She hadn't really thought about it.

Ask a lot of questions - some of them are really nice - i finally found out how my dad proposed for example. There are difficult questions to be asked too though. For example, if the pain gets too much, would she prefer to be sedated? Make sure that these conversations are had and made known to the doctors, so they can act in a way that she would want. We left these things unsaid, and my mother went through a lot of pain that could have been relieved, at least to an extent. In fact, I know that if euthanasia had been an option in this country, she would have chosen it in a second, just to avoid the last painful hours.

Ask her about her things - some of her jewellery etc may have stories behind them that you don't know, and that may make them mean a lot more to you in future. Also ask what clothes she would like to be buried in. It was so difficult for me and my sister sorting through our mother's belongings right afterwards, both because of all the memories, and also because we didn't know what she wanted herself.

Ask her about your family, what her hopes and dreams were. My mother told me that she decided to have another (third) child after me and my brother because she specifically wanted me to have a sister. She had a sister who died at 3 weeks old, and she thought that all girls should have sisters. So my sister is mine, my gift from my mother. My brother was her gift to my father. It's funny the things that you find out that you never thought to ask.

It's breaking my heart to write this and to think of someone else having to go through all this. It's been 3 years now, but it still hurts so much.

I hope this rambling helps, insofar as it can. I'm thinking of you.

hug

h


Helen_of_Poi

EJC Ireland 2006 Organisational Team

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Gnor
BRONZE Member since Mar 2003

Gnor

Carpal \'Tunnel
Location: Perth

Total posts: 5814
Posted:Funerals are often more for those that are left but its good to get an idea of what might be wanted. You can probably get a priest who at least knows your mum and will get her name right.
Dads was in an open air crematorium so all the grandkids could either sit with us or move around rather than constrained to a pew. But it was a stranger doing the service.

My friends funeral was a tieing togther of " the secret life of Nick" He kept the 5 major foci of his life mostly separate but in death united us all. We did a honour gaurd and sword arch and placement of sword on his casket as well as guard for the family. The druids ran the service and sang. SES lined the room as a guard and his family linked us all. Through Nicks death I am tied in with poi. The world turns strangely.

I am releived to hear you have started on your memories. It gives you a chance to find out not only about your mum but your dad too. It will be a focus for your dad to look back and forward as well and future grandkids to know their nana.

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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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast

Total posts: 5967
Posted:Wow.. thanks ladies... great ideas and thanks for sharing

hug2
xx


Getting to the other side smile

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Birgit
BRONZE Member since Jan 2005

Birgit

had her carpal tunnel surgery already thanks v much
Location: Edinburgh

Total posts: 4145
Posted:I can see how your parents would be wondering about the funeral thing... after all, unless she's got very specific and hard-to-fulfill wishes surely that's not something you have to plan ahead? Or am I being naive?

I remember my grandmother wanting to have a certain type of wood for the coffin and rock for the tombstone, but those were all easy to organise... then I thought it was quite important (I was eight). Now I'm smiling at my gran who never had much money and wanted expensive wood for the coffin instead of for a nice table or something while she was still alive smile


"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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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast

Total posts: 5967
Posted:smile

I know both my parents want to be cremated and their ashes buried together under a tree in a cemetary in Bangor...

The arrangments are more along the lines of... making sure the funeral home knows which minister Mum wants to take the service, knowing the hymns she wants, any particular verses read etc.

I know I won't want to think about anything afterwards... I just want to phone up and say 'it's happened'.

smile


Getting to the other side smile

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Birgit
BRONZE Member since Jan 2005

Birgit

had her carpal tunnel surgery already thanks v much
Location: Edinburgh

Total posts: 4145
Posted:that makes perfect sense smile

The worst funeral I ever went to was of a friend who killed himself aged 15. The family didn't want any of his friends to come, but half the school went because we knew that the main cause of his problems WAS the family... the priest (who I knew from working with kids at the church) had no idea at all who he was talking about, picked kiddies hymns and said "If M. were with us now he'd probably accompany us on his guitar", and I felt like getting up and shouting "What the hell do you think you're doing? Is that really what his parents thought he was like?" frown


"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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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast

Total posts: 5967
Posted:Yep... that's not going to happen for my mum.... righto, must go...

xx


Getting to the other side smile

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast

Total posts: 5967
Posted:Yeush.



Just phoned the funeral home...



That was completely awful.



'Hello, I'm just calling to enquire about my mum's funeral'



eek



Saying those words out loud, as opposed to thinking them, or writing them... is something else entirely.



ubbcrying



But I'm glad I did... it's going to be much easier in the long run.


Getting to the other side smile

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animatEd
BRONZE Member since Aug 2004

animatEd

1 + 1 = 3
Location: Bristol UK

Total posts: 3540
Posted:Fuuuuuuu*k...

I can't even imagine how awful that must feel.

I send you loads of Hugs!!

I wish you all the strength in the world to help you get through this.

hug

Here if you need anything. smile Even if it's just a smily face.


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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=Flashpoint=
SILVER Member since Sep 2004

=Flashpoint=

Pasta of Muppets
Location: in the interwebs...

Total posts: 2719
Posted:Yeah.
hug
I remember what it was like helping to arrange the stuff after my Mum died very suddenly in Greece. Dad got stranded out there and the holiday reps helped him out loads.
But the worst thing by far, for me, was having to think about what to write on the headstone. I made some stuff up, and it just felt right.
Clare, I cant imagine what it must be like having the knowledge become reality over such a period of time. Best of luck and all my love to you and yours.

Look after yourself hun hug


ohmygodlaserbeamspewpewpew!
ubbrollsmileubbrollsmileubbrollsmileubbrollsmile

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jo_rhymes
SILVER Member since Apr 2005

jo_rhymes

Momma Bear
Location: Telford, Shrops

Total posts: 4525
Posted:well done Clare, that was a really brave thing to do. I'm continually amazed at your courage and strength hug

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

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast

Total posts: 5967
Posted:Thanks m'lovelies... but it's not something that needs congratulating. It's just something that needs to be done. I'd prefer not too... smile



It's mainly motivated by fear Jo smile that... and if I keep busy organising stuff, my mind will be distracted and my overactive imagination won't get time to be cruel smile



Ahha!

EDITED_BY: _Clare_ (1171408382)


Getting to the other side smile

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jo_rhymes
SILVER Member since Apr 2005

jo_rhymes

Momma Bear
Location: Telford, Shrops

Total posts: 4525
Posted:well being proactive is an awesome way of dealing with it, even though it is motivated by fear. If i were in your position i'd be sat in the dark rocking back and forth i think. you're ace and you're mum's lucky to have you! hug

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

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