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


Neon_ShaolinGOLD Member
hehe, 'Member' huhuh
6,120 posts
Location: Behind you. With Jam


Posted:
Hey Clare. Like the others here, I haven't posted much recently because I think I've said all I can on the matter.

I will say that I definitely see the benefits of what Helen of Poi recounted regarding the death of her mother (Helen: hug). My friend whose mother died 5 years ago lives with her dad in the house that was supposed to be their retiring home, but now they are moving out due to reasons of practical locality but also for the reason that the house brings back too many bad memories. There is no right and wrong answer to both home or hospice, only practical. The emotional reasons are just that - emotional.

My own mother it fiercely independent and has expressed her desire that we 'let her go' if she ever was in this kind of position. She has seen her mother-figures (her mum is still alive) waste away to nothing in homes and does not want to suffer the same fate. Time will tell whether when that time comes if I could bring myself to abide by her wishes... Not a decision I look forward to.

Basstones. Sorry to hear about your mum. You said you knew but I hope this thread confirms to you that everyone here is more than willing to offer support when you need it. hug

"I used to want to change the world, now I just wanna leave the room with a little dignity..." - Lotus Weinstock


Gayle......!SILVER Member
Pooh-Bah
2,444 posts
Location: Bristol !!!!!!, United Kingdom


Posted:
hug

I've been away for a bit and have settled down to read this, as i always do, and have been all choked up ubbcrying but also biggrin at the amazing-ness of HoPpers.

Clare, you are so lucky to have all these fabulous people giving the most sensible, heart-warming caring advice and love. They really do rock.

I regulary think of you and come and read this thread. So, sending you and your gorgeous mama hug2 and ubblove

Gayle.....!


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


Posted:
Tony - wow, so sorry to hear that news. I remember your post saying about the news of the diagnosis like it was only last week. frown Lots of hug hug for you too.

Clare - ditto - just ditto I can't add more. hug

Thinking of you guys & trying to do Jedi thought transfer of strength and love...

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:
Clare - everyone has a different way of dealing with the unacceptable. I might be wrong, but I guess I am reading that your brother has his very own and not one that you would like to see. Now it's up to you anyway, but after all he's your brother.

Some live through it and allow themselves to be affected. Others simply close the gates, let down the blinds and pretend they are not at home. Usually those are the ones who wake up a little later. And - presuming that this is the case - he will need your support by then.

What you're going through is one of the toughest experiences. Reading through this thread made me reconsider my approach to my own mum. She's over 70 now and she's a very strong woman, but who knows just how long she'll be around for. I will take opportunity to spend more time with and invite her over to India this winter. After all, we never know and the least I would want is to ask me (again, as after my grandmother died): Did you do enough?

I send you as much hug ubbangel ubblove and sunny as I can spare right now. After all, love is something that gets more, the more you give it.

the best smiles are the ones you lead to wink


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


Posted:
love to you and your family, Clare.
I think of you often, and hold you in my heart.
xoxo
a

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


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


Posted:
You can hire commodes and things like that so that its a very short lift to them from bed. Or use adult style nappies and so catch any accidents.
Pallative care units here are amazing places that are a better final place than standard hospitals and support familes and the loved ones. Also means any visitors do not need to be looked after or tended and so all your attention where you want it to be.
If you choose to take mum home, will you be able to deal with those final images in your house. For me Dad passing in pallative care was easier. I choose to spend many of his final hours with him but I chose not be there right at the end. The 1/2 country drive after a night awake at his side made me make the decision that I would be unable to drive safely back to his side and knowing my mother and brother were there at his side I knew he was not alone. If I had of known how soon after my leaving he was going to pass I dont know what my decision would have been.
I like having my images of Dad at home are of him at his best. My images of his passing are associated with the hospital.

hugs to you
Gnir

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


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


Posted:
Thank you everyone... hug



This post isn't going to be pleasant... and I expect they will get worse.



I'm not going to do the chronological thing this time... probably better just to write about things in my head as they come up.





Mum has been on a very steep decline this week... to the extent that when I left her in the hospital tonight she was barely able to move (getting from the wheelchair to the chair, or chair to bed is a major struggle that requires about half an hour of oxygen afterwards); she can barely use her arms or legs; keeping her eyes open is a struggle; she isn't eating... and because her blood is so thin, she has had a nose bleed (from both nostrils) all day (and it hadn't stopped when I left).



She continues to say that she isn't in pain (as such), but is very uncomfortable... she can feel something 'sticking into her' inside her body. Her legs and stomach have swollen massively, and the skin is very tight... I can feel a kindof gel underneath the skin when I press it. She can't go to the toilet and she can't shower and clean herself.



She is on a constant cocktail of drips and tablets to try to fix the fluid retention, or thinning blood, or ulcers in her mouth...



The heartbreaking bit is how frustrated and cross with herself she is... she is fighting every single thing that breaks down. She won't let herself relax, worrying constantly about everything and everybody around her... but is too weak to actually do anything about it.



To an extent, the fighting is a good thing... but it is also horrifying to watch your mother fight against herself... and know that it isn't going to get better.



She isn't ready to let go yet, and we have to be patient with her until she is...



She isn't sleeping at night, and then there's either visitors or doctors, or the annoying lady two beds up who keeps making strange shrieking noises (like an upset cat) regularly.



Earlier in the week we had been thinking of bringing her home... now we don't know...



We're still waiting for hospice nurses, or a place at the hospice... or even a side room off the ward.



There's nothing my dad and i can do, other than find little things to make her more comfortable. It's too late for nice food, books, things to do... anything really, other than the physical basics.





My brother flew home on Wednesday... and it immediately prompted some kindof weird jealous rage in me (many thanks to m'lovely friend who got that one in the neck... frown hug)



On Thursday I actually felt like killing him... I mean, who was he, this stupid boy, to try to take over? Boys are useless at the practical stuff... and I felt 'what does he know'?

My brother and I have never gotten along... we are very different people and I felt cross.



Y'see, in my mind... I had been there all along, and now he was back home to take over and push me out... (I realise this may not be altogether sensible, but hey, that's how it was). It wasn't helped by my aunt telling me to stop being emotional.



I was really teary and upset, and got quite cross in general...



Anyways... after a bit of an emotional day, it was ok and forgotten on Friday... After watching my brother try to do some practical stuff, I realised that mum and dad still need me, so have gotten over my ego.



Also... I have been appointed Visitor Police (which makes me feel useful, and relatively important rolleyes)



Mum had been getting 10/11 visitors a day - and she never tells them to leave when she's tired. Apparently, if they make the effort to visit... she should make the effort to talk (and she rolled her eyes and told me to keep quiet when I argued that one).



But now that things are worse, we have to start enforcing a visitor schedule... so that's going to be happening from tomorrow.







I don't know how I'm doing in my head.

Being practical, getting stuff done for Mum... it's easy to prioritise this over the other stuff.



(there is other stuff... of course, that's life... but i don't have the energy to think about it)



Anyways... that's it for now



xx

Getting to the other side smile


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


Posted:
hug hug hug
 Written by: _Clare_

This post isn't going to be pleasant... and I expect they will get worse.


When I read that I thought you were going to yell at us and tell us all off! ubblol

hug hug hug
repeat the mantra...
All my strength, ubblove sunny grouphug

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


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


Posted:
Sibling jealousy rage is normal and healthy in my book. Especially if he is a golden boy.
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


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


Posted:
Clare, I'm with Gnor. I think if I were in your shoes and one of my brothers came swanning in trying to take over, weeks down the line, I wouldn't just have a bit of inner rage about it, I'd probably throw a full on toddler tantrum with foot stamping, screaming and throwing myself to the floor with a cry of "I've fallen over, whaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa!" ubblol

So, well done on not being as childish as me biggrin

Feed me Chocolate!!! Feed me NOW!


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


Posted:
Ive found when I am sick I like to have people around me talking, but not necessarily to me. So when you reach that lovely critical mass of people interacting I sit back and absorb the energy. I know this sounds trite compared to what your mum and your family is going through but it I guess it means so much to your mum that they care enough to come visit.

Its a very fine line for you darl. Hopefully if you quiet word and explain it to people or even perhaps write a small caring note to the regulars it might help. Short sweet visits.
Your mum is so special to so many people that all want a chance to be there for her. Dont be scared to pass out all those jobs that still need doing at home. It makes people secure to be needed. Feed the cat, drive by the house so there is a presence, weed the garden, walk the dog, trim the hedge, sweep the drive, paint the house wink, prune the roses, baskets of ironing.
All those things that you guys havent time to do right now but are too tired to do when you get home. Jobs that if they are missed wont break hearts but releive the pressure and make other loved ones feel important.

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


Helen_of_PoiSILVER Member
lapsed spinner
412 posts
Location: Dublin, Ireland


Posted:
Basstones: I'm so sorry to hear about your mother hug It sounds as though it has been very sudden for you all. I can't imagine how hard that must be - I had 15 years to prepare myself. My thoughts are with you.

And for Clare, another rambling post in no particular order:

I can totally understand how you may feel resentful about your brother's arrival, and his "taking over". Remember that what feels like him "taking over" may in fact be him trying to give you a much needed rest, and recognising how much of the burden you have carried thus far. And possibly his feeling of guilt about not being there to help out earlier.

In terms of home care - it sounds like you're all preparing really well for it, and that you have good nursing support etc. I can't see any reason therefore that everything your mother needs, like transfusions etc, won't be available to her whenever she needs them. Just make sure that she is also seen by a doctor regularly, as nurses may not have the authority to make some decisions e.g. if she needs strong painkillers etc. But it sounds like you have all this stuff covered, so I'm sure she'll get all the care she needs.

Don't be afraid to tell visitors away - i had to, lots, and they all understood in the end. Gnor is right, give people jobs. It takes the load off you, and makes them feel that they are helping.

From my own experience, once my mother went really into decline, things happened very quickly. Tumors were appearing every few days, on her bones. Her arm, ribs and collarbone all broke because of the pressure from the tumors. Then it spread to her spine, and she lost all feeling from her waist down. This also meant that she lost control over her bodily functions. She was so breathless that it was a huge effort to speak.

I'm not telling you this to scare you. I'm not saying that any of all of this will necessarily happen to your mum. Instead i'm just saying it because when it was my family, nobody warned us that any of these things could happen. It was terrifying and unexpected.

I keep going to call you, but then you may want your line to be available in case of emergency, so that's why i haven't. I always feel that my posts here are full of doom and gloom, and I'm sorry about that. I'm sending you all the energy I can, and thinking of you all the time. hug

Helen_of_Poi

EJC Ireland 2006 Organisational Team


Nephtysresident fridge magnet
835 posts
Location: Utrecht, The Netherlands


Posted:
hughughughughughughug

everyone's unique except me


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


Posted:

Non-Https Image Link


Clare, thought you'd like to know that 2bags, Momma 2bags, Amber the dog, me, Spanner and Yakumo all send you lots of love!! 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:
!!!!!



Oh my god... Jo... that's great, thanks so much biggrin



What a beautiful picture of lovely people hug Hope to see you all sometime xx



And thanks Helen and Gnor, Skully, George and Neph... hug2



I was woken by the phone this morning to say that mum tried to get out of bed last night, unaided (argh!), and fell over (I told her she was just trying to escape, but it didn't help much).



She cut herself badly along the leg, and needed 12 stitches.



The bleeding and seeping won't stop... that will probably never heal now frown



It's changed everything... we're really uncertain about bringing her home, and will be asking the Macmillan nurses tomorrow about possible spaces in the hospice.



We NEED to get her out of that ward... the screaming lady is driving mum (and us) mad. All the other ladies are very old and very sick, and the one next door to mum has no control of her bodily functions... which can get very smelly.



Mum is really angry at herself for falling, and the shock has just knocked her further. She didn't talk much today... hardly ate anything... and can't really do anything any more (including toilet and suchlike).



But she's uncomfortable, so continually wants to move from bed to chair, and back again, or change positions in the chair... (hence why she fell last night)... and each move takes it out of her.



I don't like my mum having to be treated like a baby. She doesn't like it either.



She was quite sharp with Dad and I, and although we know she doesn't mean it... it's very hard to hear.



I was at the hospital all day, and now I'm tired.



thanks xx

Getting to the other side smile


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


Posted:
oh no Clare!

Poor mum, I don't blame her. I think if I was in her position I would have exploded and gone bezerk ages ago!! ubblol

Keep strong my girl, sending all the love in the world to you and the family hug ubblove kiss

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


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


Posted:
firstly HOLLY [censored]! 2bags has a mother!

i always heard of him refer to a mother, but i thought it was a mother"ship" that brought him from the planet juggle 12, after visiting juggle 6, balance stuff 4, weird hair 16 and the planet of the gingers wink

clare, we (and you know who we means) will be here for you no mater what, and i suspects that those in other countries owuld be calling you if they could...

Step (el-nombrie)


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


Posted:
 Written by: mech


firstly HOLLY censored! 2bags has a mother!

i always heard of him refer to a mother, but i thought it was a mother"ship" that brought him from the planet juggle 12, after visiting juggle 6, balance stuff 4, weird hair 16 and the planet of the gingers wink




ubblol I really am LOLling!! hahahha

toobs' mum rocks! biggrin ubblol

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:
That's where he gets his stunning good looks then (and 2bags... rarrrr... the hair suits you smile )


xx

Getting to the other side smile


Rouge DragonBRONZE Member
Insert Champagne Here
13,215 posts
Location: without class distinction, Australia


Posted:
Oh Clare, I check this thread every time I'm online and reading it brings me close to tears. Your strength is wonderful and I often think of you even when I' not online.

hug

i would have changed ***** to phallus, and claire to petey Petey

Rougie: but that's what I'm doing here
Arnwyn: what letting me adjust myself in your room?..don't you dare quote that on HoP...


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


Posted:
Clare, can we make your mum an imaginary hospital escape tunnel that she can use when all the noise and people get too much. It can be the sounds of someone crawling down a tunnel and coming out at the other end to a beautiful place that she'd like to be. If she has an MP3 of it on some headphones, whenever it all gets a bit too much for here she could put on the headphones and drift away into a dream of being somewhere else, be it by a stream eating a picnic or up a mountain with the wind blowing through her hair.

The mind is an amazing tool and can transport you to many places without you ever having to take a step. I'm sure amongst us on HoP there must be someone able to record some high quality restful sound tracks for her. I'm willing to crawl through a muddy hole to get the tunnel sounds. I love getting muddy biggrin

hug

2bags isn't an alien..... I've seen his belly button. smile

Feed me Chocolate!!! Feed me NOW!


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


Posted:
 Written by: Skulduggery



...take a step...


take me where?

Step (el-nombrie)


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


Posted:
smile

Thanks for the thought Skully... but would you believe that already it seems too late?

I've just had Dad on the phone... it seems the hospital were in touch this morning because mum is really distressed about losing her engagement ring...

I know she had it on when she went in to the hospital, but now they can't find it.

The nurses say she's become very confused... we'll see what happens when i get up there this afternoon. Methinks it will be a hard day.

xx

Getting to the other side smile


FireTomStargazer
6,650 posts

Posted:
Look, we're all with you to support hug

Turns to the crowds and shouts: "Who loves Clare, please raise their hands!"



Non-Https Image Link

the best smiles are the ones you lead to wink


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


Posted:
Anyone any ideas on how to deal with confused people in a way that doesn't agitate or upset them further?

x

Getting to the other side smile


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


Posted:
Stay calm, calm music, say stuff to placate them if possible.Then go away and have a cry and a rant. I imagine the cocktail of drugs plus the pain will mess with your mums mind alot. frown...more so as time goes on

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


_Aimée_SILVER Member
Carpal \'Tunnel
4,172 posts
Location: Hastings, United Kingdom


Posted:
Give them time to speak.

Try not to finish their sentances, and if you must - do it gently.



Listen, and make it look like you're listening.



Try an initiate things where you can, so they dont have to start the conversation and get muddled half way through.



For example when I see a resident touch their face and look around on the table I'll say "Oh dear I forgot to put your glasses on, let me try and find them for you - save you getting up".

With out me intervening or being there they would have tried to get up and look for their glases themselves, and most probably forget what they were looking for halfway way through looking, be up out of the chair in a dangerous position, confused, and angry at themselves for being confused.



It's going to be a challenge, best of luck to you.



hug
EDITED_BY: Aimée (1183370026)

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


Posted:
smile

Good... thanks girls... that's good advice.

Getting to the other side smile


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


Posted:
I'm sorry to hear that Clare. hug

Aimée, you are wise beyond your years hug

Mech, where do you want to go? Anywhere for you sweetie! How about a trip to a fun fair. You can have fun watching me go on all the rides and being sick ubblol

Feed me Chocolate!!! Feed me NOW!


mcpPLATINUM Member
Flying Water Muppet
5,276 posts
Location: Edin-borrow., United Kingdom


Posted:

Non-Https Image Link

"the now legendary" - Kaskade
"the still legendary" - Kaskade

I spunked in my friend's aquarium and the fish ate it. I love all fish. Especially the pink ones. They are my bitches. - Anon.


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