Page: ......
_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


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


Posted:
Hey lovely lady,

of course you are emotional when you see someone you love so much deteriorating, and knowing that they are going to die. No shame. But it is depleting, physically, hormonally, mentally, and every other way to be going through so much right now. It's like a kind of marathon.



Natural to get tired, natural to be shaky and natural to suddenly overdraw your internal 'bank account' and find yourself in the 'red'. Not weak: real. You have to make 'deposits' in that account. They can be anything... walks, hugs, pois, sleep ins, cries, getting the crayons out and scribbling the pain onto paper. No one can do that but you, and it is your main role in the total of the situation:



And food. Good food really helps at these times, otherwise you don't even have the ingredients to make little things like neurotransmitters and antibodies. When people get depleted on that level, they get sick themselves. And then it's even more of a struggle to show their love and care. So right now, loving your mum in the long term means looking after yourself. Nothing to do with 'letting go', all about hanging in...



See, told you I'd come onto your thread and nag you!!

.....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:
Ahh, marathons. I can help with marathons!!
Drink something every 20 minutes, keep a steady pace, and you need to eat too - it's a long haul and Gabe said what will happen if you don't (it's called "hitting the wall").
But most importantly, you need to have trained - otherwise you're breaking new ground and it's really really hard.

I suspect Clare, that the "marathon" tips you have under control, and while you've done some "training", you haven't done as many "miles" as this ever before. But it can be done. Draw on the "training", slow the pace down if you need to and you WILL last the distance.

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


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


Posted:
grouphug

Thanks so much Bender... hug

Gabe... excellent work on the nagging biggrin (not really nagging though, just thoughtful and appreciated advice smile )

George... lol, that sounds like far too much exercise tongue


Ermm... actually, I haven't really been looking after myself... i know people keep saying too, but haven't quite got round to it yet. rolleyes

I should really start eating food and drinking water. At the minute, I'm living on either toast (but it's soda bread though wink ) or sandwiches.

And I need to start taking time for myself too... it would be good to clear my head... but if I'm not organising stuff or visiting mum, I'm thinking about doing either... it's quite hard to turn that off.

Anyways... I'm off to Dublin for the weekend, to see the lovely Rob and Durbs whom I've missed lots biggrin

We're about to do a show to the worst song ever recorded (hurrah for corporate whor'ing eek).

Going to visit mum first though smile

Have a good weekend everyone

xx

Getting to the other side smile


Helen_of_PoiSILVER Member
lapsed spinner
412 posts
Location: Dublin, Ireland


Posted:
hug

Let me know if you have any free time around Dublin this weekend, and want a chat with someone who has some idea what you're going through, but doesn't see you very often. smile

Helen_of_Poi

EJC Ireland 2006 Organisational Team


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


Posted:
Not sure we will, unfortunately frown

But, I'll text you if it's possible... you heading to Spirit tonight?

Thanks lady... hope you're well

xx

Getting to the other side smile


Helen_of_PoiSILVER Member
lapsed spinner
412 posts
Location: Dublin, Ireland


Posted:
I may go to Spirit - depends who else is, and how seriously I'm planning on getting up tomorrow morning to write my thesis.

In other words, if you are, probably. Or even if you want to grab a quick coffee/something stronger this evening, let me know hug

Helen_of_Poi

EJC Ireland 2006 Organisational Team


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


Posted:
hug
*runs off to chat to Jonny about something*
biggrin

Feed me Chocolate!!! Feed me NOW!


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


Posted:
Hopefully Clare already knows I didn't mean "just deal with it" (even though one of my other favourite sayings is "harden up")! I was at work when I rushed that out, so it might have come out a little too strong - sorry if it did - it was meant to be a "soft and gentle reproach", but maybe there was a bit of the old "slap the hysterical woman around the head" (a-la the movie "Airplane") in there! biggrin

But just at the moment I want to know why is everyone else here able to talk to Clare and I can't? It's not fair!

*goes off to sulk in the corner*
* but sends hug hug hug to Clare first*

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


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


Posted:
Miss Clare, I think I am going to have to Ireland and be your tea and biscuit lady for a while! hug

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


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


Posted:
Clare, the marathon analogy is quite close actually, and you're right - it is too much exercise but I'm afraid that for you, you have no choice - you're in it and you can't stop, so all you can do is keep going.
A bit like my 2nd or 3rd marathon which was around Lake Rotorua. The halfway point is at the top end of the lake with no other roads in to it and of course because all the runners are on the road they close it to traffic. So when I, who hadn't done my training program, sailed through the last point the supporters could get to just before the halfway mark in an hour 20min looking good they all expected me to be at the end somewhere around 3hr. Little did they know that just around the corner from there my legs just ran out of training and wouldn't go anymore. Couldn't run but could walk. Stopped at the first first aid station I came to with my "stop the world I wanna get off" story and they said they couldn't take me until the end of the race, so I had no choice and walked it. So I'm k-nac-kerd when I get to the finish line but it looks like I'm just strolling along, AND I'm about 2 hrs later than expected so Heather is thinking the worst and actually hits me when I finish for making her worried...

You gotta have done the training, but at the end of the day when you are in it and there's no way out, you just gotta keep going to the best of your training and ability.

That's you Clare.

The rest of us are your support crew, and we'll trot along beside you throwing "helpful" advice and offering food & drink and encouragement, but we can then jump in our car/bike and zoom ahead to the next spot to do it again and you just have to see us drive off with that resigned and sinking feeling you get knowing that you have to do it all yourself and there's no getting out of it. And yes - it is bloody hard work.

I know the "loneliness of the long distance runner" is only a little comparable to your situation. I know that the end of your race is an undefined point unlike the set distance of the marathon. But I know that after all is said and done you will make it to the end. You may be shambling and a little worse for the journey's wear, but you'll make it. And guess what? You'll be a better person for the experience too.

So as hard as it is, with no option to quit, we just keep going as best we can. Slow the pace down when required, coast on the downhill and savour all the moments of personal victory. The race is made up of lots and lots of little victories - and they're all your personal victories.

Take a little more strength girl hug, then take a deep breath, and keep on plodding - the end of the race gets one step nearer with every one you take.

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


pricklyleafSILVER Member
with added berries
1,365 posts
Location: Manchester, England (UK)


Posted:
Hi Clare,

It's natural that you will go through periods of feeling quite strong and then crash for what seems like no reason into feeling 'weak'. Just remember, that really, you're not weak at all. What you're going through is incredibly hard, its natural to feel emotional, to be honest, very healthy.

Don't be hard on yourself for feeling like that. Do try to look after yourself, get into the habit of sipping water. Make sure you get enough sleep. Life is generally easier to cope with when you're looking after yourself. Although I know it can be very hard to do this when going through something so hard.

Just be comforted by the knowledge, that you will get through this, and you will be a stronger, wiser person because of this. Just take each day as it comes, try not to overthink things.

Sometimes regularity can really help, I would really recommend finding an exercise class of some sort to go to, if you don't do already, which can help form part of your 'me' time, whatever takes your fancy, yoga, tai chi, dancing, pilates. Its good to have a set time, that you know you will go to. Don't ever feel guilty for spending time on yourself, its so important, you need it so you can be stronger when you are caring for others.

If you ever want a chat, feel free to pm, although I don't post much anymore, I still lurk quite frequently.

Lots of hug2

Live like there is no tomorrow,
dance like nobody is watching
and hula hoop like wiggling will save the world.

“What lies behind us and what lies before us are tiny matters compared to what lies within us.”

Ralph Waldo Emerson


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


Posted:
wave



Thanks everyone



Helen... we did make it to Spirit... last minute decision, but didn't see you. Hope you had a good night and things went well with the thesis anyways smile



Spanner... I know that you and some other close friends think I should be just dealing with it... and it's so true. Please never be worried about saying things like that. My ego might take it personally for a little while, but I'll get over it smile



I do need to just handle it... and every now and again, I do... which is better than not at all. Tis practice.



That'll be training George tongue

And thanks so much... your posts are spot on and do give strength (strange that... something so intangible as words on a screen can make a real difference).



It's a good image to have.. imagining all my mates lining up along the way with their phones in hand, ready to deal with the latest 'emergency'. (I think some are becoming more like the local cafe or pub that I visit every day smile )



It's also good to remember that friends are along the route, not running along with me, as I'd sometimes prefer. That means I can't grab one or two by the hands and force them along... Lol. Ok. Oops.



Yep... that's a really helpful image smile Nice one



Btw, why can't you talk to me George??



Skully... are you planning mischief lady?!



And jo... you are welcome anytime darlin hug hope you had a chilled weekend...



Thanks Pricklyleaf... good advice, and I'm trying to do it hug







So then... just back from a splendid weekend in Dublin with Lisa, Durbs, Rob, Keith, the drummers and Splinterific Mark...



We did a great show, despite the rain, and got really, horribly drunk afterwards (which I hardly ever do... remembered this morning why not... ouch).



But it was great to see the lads again.

It's amazing what spending time in good company can do for your perspective.



Issues (other than my mum) which have seemed really big recently, shrank right back down to sane levels, and it was great to spend time with lovely friends who are always ready with a friendly insult or abusive comment (;) biggrin)



Twas sad to see them go this morning... through my stinking hangover.



Have been in touch with mum every day over the weekend... she's doing ok.. still very shakey and losing energy..



She said this afternoon that she'll be around til Christmas... I got quite cross and said she had to be realistic. Which was harsh... but I don't want her to promise me more time when she can't give it.



I'll only get hopeful, then be disappointed. I know she needs to keep believing though...



My friend gave me a tincture made from Dandelion, nettles and clovers to improve her energy... we'll be trying that this week.



In the meantime, I'm heading round there tomorrow for a few hours... at last! I've been so bad with my visiting recently.



Take care everyone... thanks for the love and thoughts



Clare x

Getting to the other side smile


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


Posted:
 Written by: _Clare_


Btw, why can't you talk to me George??



Well, I can PM, e-mail and post, but I meant "face to face" - a real talk. The kind of talk that includes tears and laughs and hugs (probably lots of hugs)... virtual hugs only go so far I'm afraid. frown

Pleased you had a great weekend and managed to put some perspective on things. hug

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


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


Posted:
Ahha!

That kind of a talk would be good... but sure, I don't get to see my englishy mates very much either!

smile

Thats what phones are for biggrin

Virtual hugs are indeed not so good... but again, better than nothing.

x

Getting to the other side smile


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


Posted:
I'm not planning any mischief... I'm an ubbangel ubblol

I was firstly planning on coming over to be your housemaid, cook, bottle washer and gofer... That kind of had to be put on hold for a little bit due to sick cats and an even sicker bank balance. As soon as the bank balance one is remedied and the cats don't look at deaths door I will be coming.

Secondly I was then trying to work out how I could cook you up loads of meals here, that could be sent to you for storage in your freezer. That way you wouldn't have to worry about cooking, you'd only have to pull them out and nuke them in the microwave. I could do the same for your mum and dad too, so they don't have to worry about cooking either. The only problem I have (apart from being a not so great cook) is getting them to you still fresh enough to freeze, without fear of food poisoning you.... I'm still working on that one.

hug <--- soon to be in person. I promise!

Feed me Chocolate!!! Feed me NOW!


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


Posted:
biggrin

You are an angel indeed hug2

Much as I miss you all very much, I think visits and things like that should wait for a wee while (so there is time to save!!)

I don't want to be doing anything that takes me away from visiting mum at the minute... just do what I have to for work, then be round there.

However, I imagine that eventually I will very much appreciate company... and that would be great.

Nice idea about the food too...
But I don't have a freezer frown

Lol... it's grand... I need to make myself take better care... just make myself do it.

Righto... see you all sometime... and I'm sending good wishes for all those with a sore head this morning biggrin

x

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:
Try putting up notes at doors/in bathrooms etc to remind you to be nice to yourself (eat, drink, get rest, log in on HoP to get your huggles etc, whatever works for you), it's understandable that it escapes your mind so put up reminders smile

Then if you have say a full fruit basket in the kitchen, all you have to do is turn back from the front door and grab an apple or banana before you leave. Energy, water and vitamins biggrin

"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:
Nice one lady... I understand (kindof, well, as much as I'm understanding anything at the mo!) biggrin

Am sure it was fun... wish I could have been there (at least, for the end bit smile our weekend was lots of fun too biggrin)

Saw mum this afternoon... twas good to see her (finally).
She keeps telling me not to worry about her. And that I don't need to visit so often, since I have work to do. Arrrggghh.

But she's in good spirits, despite getting so slow.

They're going to ask the hospice lady for an oxygen supply thing for the house tomorrow... and a wee zimmer frame (although she was a bit indignant at that suggestion... it implies 'she's old' eek rolleyes)

She is feeling increasingly like a nuisance (and there's nothing we can say, really, to change her mind), and dad is getting more and more scared.

I don't like being away from the house... but being there is almost as hard.

Laters
x

Getting to the other side smile


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


Posted:
hug

can you get some kind of rocket-powered zimmer? add a bit of spice to her life wink

ZOOOOOM! xxx

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


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


Posted:
smile

I took a pic of mum and me on my spangly new phone today... might upload it tomorrow.

Jo, thanks for the lovely card darlin... you've been so good and it's very much appreciated.

Talk soon missus

x

Getting to the other side smile


BasstonesGOLD Member
Do you do the poiz?
530 posts
Location: Brisbane, Australia


Posted:
I haven't had the chance to read this whole thread through in its entirety yet, it has suddenly taken a much more personal twist.

On thursday we found out that my mother had inoperable cancer. They are estimating at 9 months. Clare, your posts echo what keeps running through my mind, its comforting to know that you aren't alone and that people can bond together to make us all stronger. Topics like this show the true integrity of the people on this forum that I have yet to see matched anywhere else on the web. I never expected to find solace for a topic like this on hop.

Sending good vibes and best wishes in your whole familys direction

"In the end there is only fire and a waterfall"


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


Posted:
Oh Tony, that sux. Maybe you do now want to take some time to read the thread right through...

Sending you strength and light as I'm sure everyone else here will too hug

And Clare, just another wee spank - listen to your Mum about the visiting. She's not pushing you away, you know she loves you - take some more time for yourself girl. 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


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


Posted:
Indeed, Clare, if your mum says that she is happy for you to visit less often, it is loving to listen to her. When people are very sick, they do sometimes find that time on their own, being able to 'zone out' meditate to some extent is what they want. As well as company at other times of course! And as they LOVE their children, seeing their children thriving and well is the best comfort they can have.



So from over here we wish you an immensity of thriving and wellness! And your mum, all peace and comfort...



Tony.. PM on its way hug

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


FireTomStargazer
6,650 posts

Posted:
hug hug hug

the best smiles are the ones you lead to wink


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


Posted:
Tony... best wishes for your family... I'm really sorry to hear that frown

And I know my mum said what she did because she thinks that staying away would be better for me, not her.

It's not true though. I need to be there as much as possible.

x

Getting to the other side smile


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


Posted:
hughug

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:
 Written by: _Clare_



Much as I miss you all very much, I think visits and things like that should wait for a wee while (so there is time to save!!)



I don't want to be doing anything that takes me away from visiting mum at the minute... just do what I have to for work, then be round there.





hug

I wasn't planning on being a distraction to you visiting your mum, you silly ninny kiss. I was kind of hoping I could do all the day to day stuff for you to free you up to have more time to do the things you need to.



I understand totally that you might prefer to not have visitors around right now though. Remember the offer always stands and just call when you need us. hug



Jon and I hold you very close to our hearts and think of you all the time... yes to be honest most of Jon's thoughts about you are a bit naughty ubblol, but we do talk about you a lot and send you lots of positive vibes.



We are always here... remember to shout when you need us.





Basstones, I'm so sorry to hear about your mum too. I hope she is not in pain. Remember you have friends that want to help and support you. Don't be afraid to let them. Ask for help when you need it. That's what friendship is all about hug

Feed me Chocolate!!! Feed me NOW!


fNiGOLD Member
master of disaster
3,354 posts
Location: New York, USA


Posted:
hug hug hug hug hug

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


BasstonesGOLD Member
Do you do the poiz?
530 posts
Location: Brisbane, Australia


Posted:
Clare, reading through this thread is an eye opening experience in so many ways. You are truly on a journey and the strength you have shown along the way is phenomenal. I am only starting on my path now but my support is with you the whole way.

I have been blown away by how experiences like this can bring people together though. It really is incredible how many people are out there for you when you need it. Prior to my last post I had only told a relatively few friends, every single one of them had done more for me than I ever could have imagined. Yet the people who were complete strangers to me have shown such love,caring, compassion and support that have bounced my spirits so much. The feeling that someone on the other side of the world who you have never met nor spoken to has taken the time to give you support is overwhelming. Its a shame it can take the bad to show the best of people but the things you can see as a result are a great sign for humanity grouphug

Sorry if that went a bit off-topic but this experience has really made me appreciate just how amazing and special everyone really is. hug

"In the end there is only fire and a waterfall"


BamBamPooh-Bah
1,810 posts
Location: London


Posted:
We care and we understand

Many people here have been through or are going though experiences close to yours.
This thread enables people to open up and connect with each other in ways that's sometimes hard with people that are close to you.

Claire has been through a hard journey here, she's shared both good and bad times, but it means that she's not totally bottling everything up inside (which is easily done).

It hard for carers as they are trying to stay strong for the sake of others - often putting their own emotions to one side. This thread is a safe place to let everything spill out, let others care for you for once.

HOP really is a huge family
grouphug grouphug

Love and respect to all

Lisa
xx

A kiss blown is a kiss wasted, the only kind of kiss is a kiss tasted.

I'm a woman. We don't say what we want, but we reserve the right to be pissed off if we don't get it. That's what makes us so fascinating and not just a LITTLE bit scary.


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