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


UCOFSILVER Member
15,417 posts
Location: South Wales


Posted:
ditto



hug hug2 hug

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


Posted:
Thanks everyone hug

Damn, I wish those hugs weren't electronic smile

Colin (my brother) is flying home today.

Haven't heard yet how mum did overnight... Dad seems to be ok though.

I have to do some work stuff before hospital. Then I have to go to the newspaper tonight to make sure I can pay my rent frown

Y'know, part of me feels seperate from my body... watching these posts go up, my brother coming home and mum in hospital, and it says 'what's going on, what's the fuss for?'

Part of me still hasn't accepted this is happening frown

Getting to the other side smile


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


Posted:
hug

I agree with newgabe completely, hospice at home care is fantastic if you have a service available (my mum is a home nurse!). Don't be put off too much by preconceptions of Hospices either (I worked in one for 6 months too), they should offer excellent family support, care and dignity. It's a very different approach to hospital care.

I think it's quite important your mum has a say in the decision, as far as possible, but I guess it comes down to what you feel is best for all of you. Most people, given the choice, would want to die at home, but in reality the situation can make this really difficult sometimes. With Hospice care, the staff and nurses will be able to keep control of any situation that comes up as a result of your mum's illness in a way you and your dad might not be able to at home on your own.

hug sorry for jumping in here with advice at this point, I've been quietly folllowing this thread for a while now. My thoughts and good wishes are with you. hug

Idolized by Aurinoko

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

Bob Dylan


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


Posted:
 Written by: The Tea Fairy


Most people, given the choice, would want to die at home, but in reality the situation can make this really difficult sometimes. With Hospice care, the staff and nurses will be able to keep control of any situation that comes up as a result of your mum's illness in a way you and your dad might not be able to at home on your own.




This is exactly what we're thinking just now.

Will let you all know... and thank you so much for your blessings and good wishes

xx

Getting to the other side smile


FireTomStargazer
6,650 posts

Posted:
... which is why I keep very quiet all the time, Clare. I'm lurking into this thread and my heart is crying with you - but I can't find the right words... frown



I wish there was one word, that would express what I am feeling, one word I could send out and you would know.



This one is closest to it: hug I wish I could be there.

the best smiles are the ones you lead to wink


strugzBRONZE Member
Carpal \'Tunnel
3,964 posts
Location: Southampton - Possibly..., United Kingdom


Posted:
 Written by: FireTom


... which is why I keep very quiet all the time, Clare. I'm lurking into this thread and my heart is crying with you - but I can't find the right words... frown





ditto

as Dubs said - you are doing grand and you are one strong and luvely person - staying that way (which i dont believe you know any other way of being) will get you through this smile

hug hug hug

"...We don't stop playing because we get old, we get old because we stop playing......."


Helen_of_PoiSILVER Member
lapsed spinner
412 posts
Location: Dublin, Ireland


Posted:
Hi hon,

Hang in there. hug Don't forget all the advice you got earlier - drink water, eat good food - you need it.

Home or hospice? It's a difficult call. My mother died in the hospital, a decision which we've never regretted. The staff there were great, if she needed transfusions etc (which she did, regularly), they were there, ready. It also means that I don't associate those nightmarish days with my home. Just a personal opinion, and not one that we've ever discussed, but if she had died at home, in her own bed...how could my father ever think of their room as a place of refuge again? A place that feels comfortable for her is important now, but you have to think of the rest of you too.

Every situation is different though, and you might find great comfort in her being at home. Don't stress too much about decisions - these are difficult times, beyond your control, and unfortunately there is little that you can do to make it any better, in a practical physical sense. All you can do is try to stay strong, look after yourself and the rest of your family, and provide as much emotional support for your mum as you can spare.

I'm thinking of you hon, please call if you ever need to.
hug

Helen_of_Poi

EJC Ireland 2006 Organisational Team


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


Posted:
It may be different over there but we never regretted bringing our family home when it was near the end. Our line of thought was while hospice provides great care, they are prolonging the inevitable...so we have hospice nurses and bring them home. I really hope that is available for you because it makes your mom comfy and you get to spend time with her
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


dreamSILVER Member
currently mending
493 posts
Location: Bristol, New Zealand


Posted:
hug

(words fail me)

He who fights with monsters might take care lest he thereby become a monster. And if you gaze long into an abyss, the abyss will gaze back into you.

Nietzsche


burningoftheclaveySILVER Member
lurking like a ninja with no camouflage..
926 posts
Location: over yonder, New Zealand


Posted:
reading through this brings back some painful memories, my heart really feels for you clare, but you have such a strong support behind you and youre so brave..i wish there was more i could say to explain but all i can say is hug hug grouphug heart

on spam robots - "Burn the robot! Melt him down, and then we can make lots and lots of money from his shiiiny juices!"

Owned by Brenn smile


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


Posted:
P.S. Even if you decide you don't want to go down the Hospice route, they might still be useful people to talk to about how to deal with things at home (this is what Hospice-at-Home services should essentially do - if you don't have a hospice at home service though, a regular hospice should still be able to give good advice on a number of different levels).

hug

Idolized by Aurinoko

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

Bob Dylan


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


Posted:
Thank you Strugznell smile

We should have a conversation soon, please hug



And thanks m'lovelies... hug2



Am in work now. Had to come in (REALLY didn't feel like it today), cos I need to pay rent.





Ok.... things went bizarrely badly today... and I'm not happy about it.



Finally got to the hospital to find out she had about 10 visitors this afternoon (not including the many doctors and Macmillian nurses).



This when she could hardly even speak to Dad and I, with the exhaustion, yesterday!



There were three of them there when I arrived (they are all my uncles and aunts, her sisters and brothers (and in-laws), but even still).



Dad had gone to pick up my brother from the airport (he flew home today).



I couldn't even speak to her properly, because there were other people there. Every time I said something mum rolled her eyes and told me to keep quiet (ubbcrying). There was no way I could tell the visitors they should leave and let her rest.



I was late leaving the hospital and going to work (mum kept shoo-ing me out - I didn't feel like I could leave with such bad energy, but had to in the end) and it all finished when my aunt actually had the cheek to say 'that's enough now Clare'.



Am quite cross. Ok. More than cross. Quite angry and very frustrated. Almost feel like I'd prefer not to see her if I'm going to be constantly told to shut up and go away. That's worse.



Mum and Dad have decided to do the home care thing. They seem to think there's a few weeks left, whereas the speed of the decline in the last few days had suggested more like a couple of weeks to me.



They're getting a bed, commode and special chair in the front room - it's been ordered and should take a week. There will be Macmillian nurses calling out in the morning and evening to get her ready and clean her.



I had planned to go home, but if my brother is going to be there, I'm not so sure.



My brother and I have never really gotten along, and as it seems I'm going to be pushed out anyways, I don't want to add to the negativity in the house.



I'm sure I'll get over it, but am quite annoyed at being pushed away at all. Trying not to take it personally, but as a few of you know, am finding that quite hard.



Then, to top it all off, my lack of working is finally hitting my bank balance... (or lack of balance smile ).



It'll all be fine in the end... but the journey ain't so good.



xx



PS: Helen... she's getting another transfusion in the hospital today... and tomorrow. It might help her breathing. I imagine, if necessary, the nurses could do that at home?

Getting to the other side smile


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


Posted:
hug Sometimes when people are stressed they say utterly the opposite of what they really mean. Maybe all your mother mean was for you to go and do the things she knows you need to do and the only way in her tired state she could think of was to be abrupt with you. Don't take it to heart to much babe hug

Take all the great advice offered and make sure you take care of yourself.

Gabe, you are wise and correct in what you say about there are some places that are not so good to be in at the end. I kind of was meaning the choice between home and hospice, but as you say sometimes people panic at home and...

Clare remember we are here. If you want to rant, vent ,cry, sing, laugh,... whatever you feel the need to do, we are here to listen. I'm just sorry we are not closer to you to do it face to face. hug

Tomorrow the sun will rise and the beauty of the world will go on. We are all just passing through.

Feed me Chocolate!!! Feed me NOW!


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


Posted:
Yep... thanks lady hug



Btw, this thread is really helpful for me at the mo...



It helps get things straight in my head, I can get other opinions from lovely and knowledgable people... and it also means I can ask people to look here when they write or text or phone to see how I am.



The last point might seem a bit callous, but it's so draining telling the same sad story over and over again.



Anyways... just passing through... (with thanks and hugs) smile

Getting to the other side smile


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


Posted:
Clare, my love goes to you, your family, and of course your mum hug

Before the commode, and chair (I'm assuming its one of those electronic ones that tilt upwards to help people stand up?) arrive, get somebody either from the hospice or the hospital to show to lift properly.
When she gets home there may be a point where your mum cant move herself without some help, and there wont be a hospice help or nurse around, and the responability will fall on you or your dad. Learning how to do it properly will make it the most comfortable for her and the easiest for you.

I hope I dont sound too patronising, as reading that back sounds like I'm lecturing a bit redface

I work in a nursing home so deal with alot of people with a range of immobility problems, some in the same situation medically as your mum. Its differant with each case, but learning whats best for the person and for you, makes all the differance in making the little things like washing, dressing and going to the toilet so much easier.

If you need any advice please dont hesitate to PM me, and I'll give whatever help I can. I wont start spouting off stuff here as I already think I've sounded too teacher-esque, but - if you feel comfortable with it, please let me know if you want a PM with some info.

Once again, my love goes to you hug

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


Posted:
No worries lady smile

All advice muchly appreciated... and feel free to post here, if you wish.

We thought of the lifting thing already... and will probably ask a nurse to show us if she does come home.

Can you think of anything else?

x

Getting to the other side smile


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


Posted:
Clare hug

Another angle on your Mum being abrupt - she's probably been worn out with the extra visitors and just wants to be left alone for a bit. You know she loves you and wouldn't be angry with you.

The relatives thing - it's inevitable (someone told me recently the saying "where there's a will there's a relative"). Remember that you have had the full attention of your Mum and Dad over the last wee while and you've (hopefully) said all the private things you need to have said and you've enjoyed each others company. Now everyone else who wasn't as physically close as you is coming to try and do that too but they will never share the same level of feeling that you and your Mum did. Of course it's going to feel crap because you feel like you "did all the work" and now they're coming in at the last minute and you are relegated to the back of the queue. Clare my girl, it's part of letting go. You have to let her go. But you will always have those special times with her that none of them did to hold in your heart.

My wife went through the exact same thing when her Mum died of cancer (in hospital by the way). At the very end it was Heather that saw her last moment slip away while everyone else was having a seperate conversation/argument. She felt angry at them all naturally, but in the end realised it was only natural and that she alone had had that special last moment with her mum.

Don't worry about the relatives Clare, just try and "be". Be there quietly in the corner if that's the only space available but I'm sure that for your Mum no matter where you are physically, you will always be right there by her side.

As Mech said - it's coming now. But you're ready - I'm sure of it. You just have to play it out. (Touch your nose).

Be calm. Be at Peace. 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:
Thanks George... I know you're right hug


But:
"Clare my girl, it's part of letting go. You have to let her go."

Nooo. Dammit. (pouting and childish stomping of feet)


Hmpf.

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:
I can understand you're upset about your aunts and uncles claiming your mum's time. I'll get a little story off my chest, maybe that'll help a bit.

My grandmother died of cancer when I was 8. She'd been sick for as long as I could remember, though it was stomach/bowel cancer and came in waves, years apart.

She moved into a flat in the house that my dad designed for us all, we moved in there when I was 4, and my parents knew she wouldn't be able to care for herself forever.

When things got worse and worse, we did one of the rooms in our part of the house up nicely, and got one of those beds, and a nurse to come round every day, just like you are planning to do. At first she could still get up, then she couldn't. I can't tell you much about the details of caring for her, because my mum (her daughter-in-law) was bearing the load mostly on her own, and my parents were trying to keep my sister and me from seeing our gran unwell.

All I saw was at lunch, when she couldn't keep her food down anymore, and I went into her room when she was well enough, which wasn't often towards the end.

She only had 1 child, my dad, but both her brother and sister were retired and in walking distance and well. They hardly ever came by.

When she was dead, her sister was one of the first people to go to her flat though, and take stuff that she wanted, even though she knew my dad would've liked some of it as a memory of his mum, and without even asking mum, me or my sister. Funnily enough, some of the more valuable stuff was among that, which wasn't annoying because we wanted to sell it and make money, but because of the whole way she went about it.

Later, when she herself was in the hospice and dying of cancer, and her daughter had nervous breakdown after nervous breakdown, and it was my mother again who did a lot of the visiting, bringing things, cheering her up and helping the nurses bringing her to the bathroom, she apologised, but that was too late for my grandmother.

So in other words, don't get upset at your aunts and uncles. They can probably see how hard things are on you and your dad, and want you to be able to pay the rent as you say, and take some of the load off you, and to let your mum know they love her and want to spend some time with her while they still can.

I'd much prefer to know that my grandaunts and -uncle would've chased my mum out of the room a bit more often to live her own life and spent some time with my gran smile

But then again, everyone has their own way of dealing with these situations, noone's perfect, and no way of coping is perfect either, and we'll all get "I wish I had..." moments later. We're all selfish about the ones we love, and it's only natural that your aunts/uncles want your mum's time, too 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


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


Posted:
I just keep on sending you my love heart

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:
 Written by: _Clare_


Nooo. Dammit. (pouting and childish stomping of feet)
Hmpf.


smile frown

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


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


Posted:
 Written by: _Clare_


ubbcrying

Thanks so much everyone...

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


Ok.

This is all quite awful, basically.

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

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

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

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

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

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

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

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

Balls.

ubbcrying

hug


Hi Clare,

I wasn't intending on posting this but read this post and changed my mind. My mother passed away a week ago today (they originally gave her 9 months but it spread so rapidly we only had 5 weeks with her). The last week I stayed in the hospital by her side alongside my brother and step-father. Even with the 3 of us there the hospital staff were invaluable, we wouldnt have been able to do it without them and vice versa.

Since the day she was dianogsed we wanted to get her home where she was comfortable which unfortunately for us never happened. At the end though it was made alot easier being in hospital, I can't even dream of what we would have done if we hadnt had the nurses there at times. Especially with their expertise in those wards (We were also in the care of a cancer specialist who had specialised on pain relief) so we knew that mum wasn't in pain at all.

Whichever choice you decide to make sure you give yourself time off. It can be so emotionally and physically draining if you don't make sure you spend some time doing things as normally as you can. It helps when you know she is being looked after by the people you know will look out for her. Follow your heart though and you will be fine

These are hard and sad times but you are surrounded by friends and those who care grouphug hug

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


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


Posted:
hug Basstones, I'm so sorry to hear your mother has died. For her I am glad it was fast and as painfree as possible, but for you, the speed of it all must have been a terrible shock. hug

Feed me Chocolate!!! Feed me NOW!


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


Posted:
Tony! I didn't know! I hope to see you tonight at West End. Otherwise I will phone you. Huge warmth to you in this cold weather... hug

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


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


Posted:
Thank you Spanner-lady...

There's a few PMs I haven't responded to yet... am sure I'll get round to it smile

Thank you for that post... as with many posts recently, lots of it rang true hug

Basstones... I'm so sorry to hear about your mum... I've been thinking about you.

It was so terribly quick for you. My thoughts, and love, go out to you and your family.

Take care of yourself... hug

fni... I know you read here... again, I'm sorry for non-MSN or PM response... but I'm thinking about you and your family too hug

Take care darlin...


So then... she had a bad night and didn't get much sleep, so she's not too happy today.

She'll get Part 2 of the blood transfusion today, and the doctors said she may even be allowed home on Monday (if we can get cancer nurses sorted out by then).

She's also getting another scan to see how her lungs are.

My brother is home to stay a while... I'm reserving judgement on how I feel about that.

Must go... will be back later.


In the meantime... I want everyone who reads this thread, posts (or not) and sends good wishes to mum and the family to know that I/we appreciate it very much.

Thank you for sending your energy and love... I check this thread in the morning and evening (or if I'm in work), and it really gives a lift to see all the constructive ideas, lovely thoughts and shared truths.

This thread has gone on for a year, through lots of different times and emotions, and thank you for supporting me through it.

With love
Clare x

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:
No worries, mate wink

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


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


Posted:
I think most of us wish we could do more
hug Clare and Tony

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


mausBRONZE Member
Carpal \'Tunnel
4,191 posts
Location: Sihanoukville, cambodia


Posted:
As with many people on here I have followed this thread from the start, and believe I've not posted since the very beginning, due to lack of words. All of the best advice in the world has already been given here, so I'll just add another one of these hug a lot of this ubblove and as much of this sunny as you may need.

Take care lady. smile

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


Posted:
thannk you all for you kind words and hug's

i know it is all being taken in

thank you for your warmth,and your energy

Step (el-nombrie)


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


Posted:
Nice one maus...

I think there are loads of lurkers in this thread who are sending you continual love and support, Clare, but who, like Maus, know that advice has already been said.

I think you have most the hop community sending your family love and blessings!! hug

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


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