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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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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
Posted:smile

Thanks m'lovelies...

Has been an interesting few days...

Friday's boat trip was great... parents really enjoyed it, it was great weather and very pretty. But mum completely overdid it, flapping about, worrying about stuff, and she practically ran up a very steep gangway that she shouldn't have... with the result that on Saturday and Sunday her energy was completely gone.

She spent both days sitting in the living room, kindof slumped in the chair and not even able to speak. She said her eyes and head felt cloudy and she just couldn't do anything.

But, yesterday she was much better, much happier, relatively bouncing and delighted that the energy slump of the weekend was not permanent.

So all is as normal as can be right now.



I had a good time on Friday day, and it was good to see Dad wandering round the boat, enjoying the time by himself.

Friday night at Lisa's (faberge) party (which was great smile ), I cried on a few people then spent the rest of the night spinning - so that was great. Lisa (bams) warned me that parties were hard... and she's right.

It's a strange situation - people want to ask how you are, but you don't really want to go into details, cos you know you will cry on them accidentally, and you also know some people can't handle that... you have to pick and choose your victims smile (none of whom minded, of course, because they rock biggrin)

Saturday was spent bimbling about in the rain, then visiting mum that night... it was so upsetting to see her that low... I ended up crying on them too. Came home that night and contacted about 11 people to see if they were available for emotional stuff... and no-one was. This was a bit hard, but also good practice.

Johnny has been reminding me recently about how this is a very special time for me, when I will become much stronger, with less need to rely on others in all parts of my life... times like Saturday night is the practice for that - so it was positive, in the end.

Sunday was spent under the duvet feeling miserable, then seeing parents, who were also feeling miserable... lol, it was raining heavily all day though, so it kindof fitted. And I brought round some of the lovely Jasmine tea LazyAngel sent from China... so we watched the jasmine bulbs expand and grow in the water smile (thanks mister!!)

Monday, all was better. Mum was happy, with energy again... so it passed on to the rest of us, and we were all happier too.

I even did some shopping smile So I can eat now... yum.

Hmm... think that's it... she's back on steriods again, so her stomach and face are very bloated, but she's in good spirits, so that's the most important thing.

take care
Clarex


Getting to the other side smile

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bluecat


bluecat

geek, level 1
Location: everywhere

Total posts: 5300
Posted:hug

tongue


Holistic Spinner (I hope)

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Birgit
BRONZE Member since Jan 2005

Birgit

had her carpal tunnel surgery already thanks v much
Location: Edinburgh, Scotland (UK)

Total posts: 4145
Posted:Sounds like an ace weekend biggrin

I know what you mean about parties... I usually stay away from people when bad stuff happens, but you can't do that forever (and the "good" ones will notice anyway). But if someone cries on me, I LOVE to give a hug and some advice, but it always makes ME cry, too, which is a bit stupid. Especially considering that I'm usually "tough" and "unemotional" when it's about myself ubblol


"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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georgemc
BRONZE Member since Oct 2006

georgemc

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

Total posts: 2387
Posted:hug hug hug
It's all "training" Clare! Keep it up.

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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LazyAngel
GOLD Member since Jul 2004

LazyAngel

Carpal \'Tunnel
Location: Cambridge UK

Total posts: 2895
Posted:glad you enjoyed the tea smile
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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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
Posted:Things were good this week... but it's been a bit down this weekend.

It comes in waves, feeling good - you know it won't last, and it doesn't.

That said, did productive things yesterday... Dad came round to help me cut back the jungle that was my garden, so it was nice to spend some time with him. Then mum and I finally got on with my question/answer thingy...

And I found out that mum had about 80 boyfriends before she married dad, aged 35!!!

And before you are horrified (like I was - as well as mildly amused), we're talking about a very strong Christian woman from rural Ireland - so a 'boyfriend' was someone you went out for dinner with, or out for a walk with. It was never more than hugs or, on the very rare occasion, a kiss! ubblol

(Certainly not, she said in a disgusted tone, 'the kindof jumping in and out of bed with everyone that passes by that goes on nowadays'! smile )

Still, can't help but laugh when she talks about her 'one night stands'... the meaning has changed a bit since she was a girl!

Meh... guess this is what it's all about now... sharing stories.

She even told me last night that she had a tape of my grandfather (who died three years before I was born)! I'd never heard it before... it was interesting... he sounded like a country man with a cheeky sense of humour.



Anyways... back to the bad stuff.

Despite the sunshine and 'every reason to be cheerful'... I'm just not feeling it.

Everything is piling in on my mind at the same time - so all of these things are there, and take turns at being my main cause of worry throughout the day...

* Mum: guilt about not being there enough and not coping well enough. Mum also told me yesterday that when her Dad died she didn't mourn him until well after the funeral and after everybody else was ok. She said she didn't let it affect her work... I don't think she understands why I'm so affected, and I think she feels I'm not coping well enough (well, it's a bit more than I think it... I know it). Dad is working too hard and I'm worried about what's going to happen to him when she goes.

(That said, BamBam gave me great advice (and it's great life advice too) about not mourning things before they happen... I've been trying to keep with that)

* Work: guilt about not doing enough, not getting enough gigs, not paying people quickly enough (because they always ask). There's always more to be done and more demands and pressures to meet. It sucks up so much time, and never seems to get anywhere. People say they understand, but I don't think anyone really does... it's my problem, so they don't feel like they should be inconvenienced.

* House: it's a complete mess and stuff keeps breaking (like the washing machine). I realise this is a small point, but it's just another thing I don't seem to have control over.

* Friends: Still having big problems with having to do this alone.
I feel angry and frustrated that I've spent so much time being there for other people so often and now no-one is here for me (please don't be offended by this... I know I have lots of people I can call, and it is very, very appreciated, and thank you for the support (I'd be fcked without it), it's just a different thing from actually having someone here).
I really am that childish. I want to stamp my foot and cry out 'why'?
Some friends I can rely on to be there, some I can't, but I feel guilty for being negative so often to these people who phone up to check that I'm ok. It feels like some are avoiding me because of it.

I'm also getting more paranoid because of this... I asked a friend today if that negativity was why she hadn't been in touch... she replied 'but we didn't talk much before this either'... and that was true.

I've been very open about this with people I don't really know so well, and so shouldn't be hurt when I don't hear from them.

I have no idea why I am... I guess I just can't understand much these days.

If you're my friend and reading this... please, don't be offended by my last point. I use this thread to be open, it's not necessarily sane or logical or true... it's just what is in my head at the time.

There's no advice anyone can give me on what I'm doing right or wrong...

The only reason I'm writing this down here is because it gets it off my chest and because maybe other people will identify with it when they're going through a similar experience.

It's just part of this crappy journey.

Sorry frown


Getting to the other side smile

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UCOF
SILVER Member since Apr 2002

UCOF

Carpal \'Tunnel
Location: , United Kingdom

Total posts: 15414
Posted:*lick*
Thinking of you Claire kiss


(also, I found you a new Friend ubblol )


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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
Posted:Lol, god that would be so appropriate... biggrin

I was thinking of getting a dog or cat... or fish (better than a baby, anyways biggrin).

(but am allergic to cats, also to dog's teeth)

When in my normal mind, I don't think you should substitute feelings of insecurity by giving love to a small, defenceless creature (or expecting it back)... but right now, I can appreciate why it would be a distraction.

smile

Maybe I should get an electronic pet... so I just have to change the batteries when it dies smile


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:Do you not already have one of those...? rolleyes

"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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Birgit
BRONZE Member since Jan 2005

Birgit

had her carpal tunnel surgery already thanks v much
Location: Edinburgh, Scotland (UK)

Total posts: 4145
Posted:No, that's a quote from Glass, not from Clare, Neon... read those signatures properly! spank

"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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Glåss
DIAMOND Member since Nov 2001

Glåss

The Ministry of Manipulation
Location: Bristol, United Kingdom

Total posts: 2523
Posted:how about an old dog with no teeth?
biggrin


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georgemc
BRONZE Member since Oct 2006

georgemc

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

Total posts: 2387
Posted:well, if no amount of words will help...

grouphug

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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Neon_Shaolin
GOLD Member since Jul 2005

Neon_Shaolin

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

Total posts: 6120
Posted: Written by: Birgit


No, that's a quote from Glass, not from Clare, Neon... read those signatures properly! spank



Achem...

 Written by: Me



 Written by: _Clare_


Maybe I should get an electronic pet... so I just have to change the batteries when it dies smile


Do you not already have one of those...? rolleyes


rolleyes


"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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Birgit
BRONZE Member since Jan 2005

Birgit

had her carpal tunnel surgery already thanks v much
Location: Edinburgh, Scotland (UK)

Total posts: 4145
Posted:Yeah... I thought the "do you not already have one of those" was referring to her signature. Oh, plus I wasn't actually all that serious tongue

"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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Neon_Shaolin
GOLD Member since Jul 2005

Neon_Shaolin

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

Total posts: 6120
Posted:I didn't really think about her signature when i was writing it! I was referring to the possibility of her having a robo-dog or a tamagotchi... You filthy-minded girl you... spank

Where does it say I was referring to a vibrator? She's too much of a nice girl for that! rolleyes


"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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Birgit
BRONZE Member since Jan 2005

Birgit

had her carpal tunnel surgery already thanks v much
Location: Edinburgh, Scotland (UK)

Total posts: 4145
Posted:Hahahahahahaha! This must be the FIRST time ever I see you trying to DIScourage an innuendo and appear innocent. And what tells you I wasn't thinking of battery-driven rotating nipple tassles anyway, hm?

(Sorry Clare, you can have your thread back now, I'll leave poor little Dave alone, he might blush if I go on about these things hug)


"vices are like genitals - most are ugly to behold, and yet we find that our own are dear to us."
(G.W. Dahlquist)

Owner of Dragosani's left half

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
Posted:Hahahahah...



Nice one lads and ladies... comedy is just what I needed grouphug



A dog with no teeth Mr Glass?



Sounds perfect... but it needs a punchline... smile



hug



Btw... just to make clear, I don't expect anything back when I'm there for people - not at all, it usually makes me happy to feel like I can help.... I hope it didn't come across like that in my last post... I was just feeling fed up when I posted it. A bit selfish and grumpy.



Also.. I really do appreciate all the love and support shown to me by the people here... it's great (and Mech... muahsgurhgah... thank you hug). I just need to be hugged for real. Very much.





Went to see Mum tonight... she's not too well (though she says she is).



She's shaking alot and is getting ulcers in her mouth and on her tongue.



Tis very hard watching this happen.





x


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:hug

Feed me Chocolate!!! Feed me NOW!

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Helen_of_Poi
SILVER Member since Apr 2004

Helen_of_Poi

lapsed spinner
Location: Dublin, Ireland

Total posts: 412
Posted:Hello hon hug

I know I haven't posted here much, but it's difficult to bring up all those feelings again, (although they keep surfacing anyway). You've mentioned about how the better, more energy filled times always pass - so do the darker ones. Try to remember that as you ride these unpredictable waves. I know what it feels like for everything to be beyond your control. Your friends also feel this, because ultimately they feel that nothing they can do can really help.

Your mum has said that going through this kind of stuff didn't affect her work etc - with all due respect to her, she may believe that, but those around her at the time may have begged to differ. You are aware of how your moods are affecting other people, and all aspects of your life. That's healthy. Not pleasant, but healthy. Many times in the course of this thread you have apologised for things (largely unneccessarily I'll add). It shows what a caring, good person you are that you are still thinking about others outside of your family at this time.

Also I am a firm believer in expressing your emotions, letting them show, and sometimes letting them rule you. It is better to do this consciously and go with it. I have many friends who have lost parents, as well as my own experience, and in many cases those who appear to put a brave face on it turn out to be less well off than those who were visibly falling apart. I have seen people who seemed to be "coping very well" develop serious depression and drinking problems a few years down the line, and I think the bottled up emotions have a large part to play. In contrast, I have had other friends who would cry or scream or whatever whenever they felt the urge, and now they are much more stable, happy people than those who didn't let it show.

You will go through many things you don't understand. I came quite close to smashing my tv one night because I hadn't slept in ages, and was spending time at the hospital until the wee hours every night (this was in my mum's last days). When I got back to my flat at about 5am one night, still unable to sleep, I put the tv on, and the only thing on was "Insomnia", a reality tv show where people stay awake as long as possible. I switched the tv on, and they, who had voluntarily undertaken this regime of sleep deprivation, had been allowed to take a nap. It just made me so angry that they could sleep and I couldn't. Completely irrational of course, but that's how I was feeling at the time.

A day or two later when I was in the hospital with my mum, she told me (with great effort, she was so weak), that she didn't want to be there any more. She got me to call my family together. She was ready. Nature didn't see it like that though, and she lasted another torturous night in the hospital, in severe pain, which my brother and I who were keeping vigil were begging the nurses to do something about. She told us to end it. But we couldn't.

Later my brother and I each admitted to the other that we had seriously considered smothering her with her pillow that night. There. I said it. It was so bad, and so painful that we both considered killing our mother. My only consolation is that my father was not there to see her at her very lowest.

I seem to have written a lot more than I planned. my point, if i ever had one, is that I felt and thought things that I wouldn't have dreamt of before. Does it make me a bad person? Almost 3 1/2 years on, I've come to the point of thinking, that it probably doesn't. I know I was very difficult to be around for a long time (and still at times - poor Lee takes the brunt of it - sorry - hug ). People can go to the extreme darkest depths, but they come out of it again. The pain does ease.

Be careful with alcohol, be careful with who you fall for. You are vulnerable at the moment. Lean on good people. They've leant on you too, and will do so again. And remember that there is no "right way" to feel or to "cope" (I hate that word).

And call if you ever need to.


Helen_of_Poi

EJC Ireland 2006 Organisational Team

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
Posted:Helen... I love you very much, you rock missus... thank you for this post... hug

I hope by posting it made you feel stronger, and got some of your thoughts in order...

Well done for your bravery, and I respect and admire your strength so much!

You are the most not-bad person I know smile
You are such a tender and gentle wee flower, but yet, by contrast, able to herd 3,000 juggler kittens into a field in cork, while simultaneously not freaking out.

And Martin certainly has faith in your goodness wink

Thank you for sharing lovely lady, and thank you for your support... I'm sorry things became so bad for you... but you held it together and you are strong.

Hopefully I will see you soon... and give Lee a hug from me for also being splendid biggrin

(Btw, it was great to talk to you at Lisa's party... ermm, sorry for indirectly burning you smile That's both you and Martin I've indirectly burned... lol... who's next? Muhahahah)


Getting to the other side smile

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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:things are hard now but consider my signature and the good times you had with your mother...well, maybe it's too early but keep the quote in mind...it's brought me more comfort than anyone knows

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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Helen_of_Poi
SILVER Member since Apr 2004

Helen_of_Poi

lapsed spinner
Location: Dublin, Ireland

Total posts: 412
Posted: Written by: _Clare_



(Btw, it was great to talk to you at Lisa's party... ermm, sorry for indirectly burning you smile That's both you and Martin I've indirectly burned... lol... who's next? Muhahahah)



confused ubblol If getting me to enjoy myself spinning for the first time in ages, and me predictably burning myself (only very slightly i might add) is your fault....I forgive you ubblol hug

You know the way people in this thread keep telling you to stop apologising and assuming responsibility for things that aren't your fault...you might want to listen wink

Hope to see you soon hug


Helen_of_Poi

EJC Ireland 2006 Organisational Team

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Glåss
DIAMOND Member since Nov 2001

Glåss

The Ministry of Manipulation
Location: Bristol, United Kingdom

Total posts: 2523
Posted:You want a punchline:
Whadda ya call a dog with no teeth?

Anything you want, it can't bite you.

Arf arf.


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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
Posted:Oops... this was for Helen...



Hahahha... goddamit, I'm trying!



Puh. Righto, I'll just change the habit of a lifetime tongue



But in fairness... I did slightly pressure you to keep spinning (rather like I did with Martin when Bob left that large scar redface)





smile



And this is for Drew...



hug hug hug



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



smile

EDITED_BY: _Clare_ (1181589092)


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:*again feels inadequate on the other side of the world when Clare needs a big hug* frown

hug hug hug
Helen, you rock! 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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Durbs
BRONZE Member since Sep 2001

Durbs

Classically British
Location: Epsom, Surrey, England

Total posts: 5688
Posted: Written by: _Clare_


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




aka Mech? wink


Burner of Toast
Spinner of poi
Slacker of enormous magnitude

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
Posted:George... stop feeling inadequate!



(lol)



There's really no need! hug



( tongue )



And Durbs spank


Getting to the other side smile

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Durbs
BRONZE Member since Sep 2001

Durbs

Classically British
Location: Epsom, Surrey, England

Total posts: 5688
Posted:Pssshh, busy at work are we? wink tongue

Burner of Toast
Spinner of poi
Slacker of enormous magnitude

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squarefish
SILVER Member since Sep 2002

(...trusty steed of the rodeo midget...)
Location: the state of flux, Ireland

Total posts: 403
Posted:I actually rather like that scar, it's like a kiss that never fades smile

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
Posted:Actually Durbs, I was quite horribly busy in work last night...twas exhausting.

And Martin biggrin hug that feels better hug


Getting to the other side smile

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