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_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
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


Birgit
Birgit

had her carpal tunnel surgery already thanks v much
Location: Edinburgh
Member Since: 27th Jan 2005
Total posts: 4145
Posted:Valura, you weren't!! I think Doc was just saying don't put your hopes on things that very probably won't work - be prepared for the most likely outcome, which is unfortunately bad. Spend all the time you need (and she needs) with your nan, make sure she has as good and dignified a time that she can get, and if a therapy should be successful, be all the happier.

I've lost my grandmother, aunt and grandaunt to cancer so I understand how you feel hug

My grandaunt was very lucky to get a place in a hospice, where she was able to die in dignity. The room was like a small flat, just for her alone, and the carers were not indifferent nurses (I know not all nurses are, but they usually aren't enough to really talk to all patients) but a mix of professionals and volunteers with lots of time for the patients. There was a kitchen, and very few regulations to limit the patients' wishes, visiting hours, etc. I think if I was diagnosed with a terminal cancer and couldn't be at home, I would want to be in a place like that.


"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


Doc Lightning
Doc Lightning

HOP Mad Doctor
Location: San Francisco, CA, USA
Member Since: 28th May 2001
Total posts: 13919
Posted: Written by: Birgit


They exploit the hopes of sick people and their families for money.




Birgit said it best. These people are the lowest of the low. In fact, these are probably the only people in the world who I would wish cancer on.


-Mike )'(
Certified Mad Doctor and HoP High Priest of Nutella

"A buckuht 'n a hooze!" -Valura


The Tea Fairy
The Tea Fairy

old hand
Location: Behind you...
Member Since: 2nd Jul 2004
Total posts: 853
Posted:hug

I worked for 6 months at a hospice a year ago. Birgit is right; I find it digusting to see people who are very ill being exploited financially and fed false hopes.

The hospice I worked at provided a range of complementary therapies (free of charge) like reiki, reflexology and aromatherapy. These were never marketed as a 'cure' for any illness, but a means of easing stress and sometimes the symptoms of illness and medications.

The majority of patients felt they benefitted from these, especially a reduction in stress that helped many of them come to terms more with their illness and impending death. The philosophies and ethos of the therapists and their practices, the gentleness, the lengthy contact time with patients, was a great source of comfort for many. When compared to chemo and invasive treatments used to fight cancer, many were relieved that there was someone who could offer them some help without causing them pain (lots of them have had quite negative experiences with surgeons or doctors).

There is no cure, but there are studies out there which suggest that things like having a positive attitude, demonstrating 'fighting spirit' as opposed to 'helplessness and hopelessness' and attending support groups can have a positive impact on survival times and recovery from chemo sessions (such as studies by Spiegel et al and Downer et al, can't remember dates off top of my head). All the evidence is preliminary in nature though, as it is extremely difficult to conduct rigorous scientific studies on terminal illness like cancer.


Idolized by Aurinoko

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

Bob Dylan


MikefromGlos
MikefromGlos

Hitman
Location: Gloucester England
Member Since: 10th Jul 2006
Total posts: 985
Posted:Reflexology, massarage, sweedish massarge, armothearpy all come under the heading holistic thearpys they are prehaps one of the most helpful things ever i have found they ease stress and put people in a positive mind set people who think negativly wont get better cuz they dont want to so there body wont.

What these therpies do is relieve stress putting a positive mind set on you it can also help clear toxins from the body which is a great help to the imune system.

Although never markted as a direct cure they do help i know this because my mum is a holistic therpist so i have had direct contact with it put it this way it help cure my insomnia


he he i am mike the amazing gloscircus person who is mike.

Officaly an exception to the Poi Boys are Girls Thing


_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:Hello all wave



Well then, it's been a while since my last update, so I thought I'd let you know how it's going...



In case you haven't/don't want to read the rest of the thread, my mum was diagnosed with pancreatic cancer this summer.



It was horrendous for my father, brother and I, and the thought of having to face the future without her was brought into very sharp focus. After a few tests and trials, the doctors decided she could undergo chemo.



Five weeks into starting the course, she had swollen up like a balloon and couldn't walk very far. Also, her legs went a bit horrible (you don't want the details), so the doctors took her off the chemo for a couple of weeks. During this time, much of the swelling went down and she started feeling much better.



She went back onto the chemo for three weeks, and last week had another week off.



She started her last three weeks of chemo on Wednesday morning.



So, around mid-November she'll be getting a scan to find out if the tumour has increased, decreased, stayed the same or completely gone away (the last one is rather optimistic, I know!).



My mother is grand throughout... occassionally, and before chemo, she can feel rather down. She can't walk too far, and I think she feels a bit embarrased about holding my dad back. However, her mood has been ridiculously good - she is staying confident, smiley and optimistic - saying that she plans to stay around for a while, that she feels fine, that whatever comes will come, that she's 66 and had a good life, and that she has her faith.



It's quite hard for my dad and I though... we let ourselves believe her optimism, because we have too. If we continually reminded her (and ourselves) of the impending inevitable then she/we would be sad and it would bring her mood down.



I think the plan is to just keep going until we can't anymore... then deal with the shock (because it will always be a shock) when it happens.



My dad is coping ok, although you can see it's very hard for him. He bimbles about, doing stuff and housework and other busy things, and trying to keep optimistic.



Mum has a lot of old friends and relatives, and she goes out for lunch regularly... there are always people phoning and calling to the house to speak to her.

I think she loves the attention, but sometimes I wonder if my dad feels a little left out. He's a much quieter person, and I think the constant activity drives him slightly mad.



However - they're still going on holiday!!



During the last week off from chemo, Dad took her to Torremolinos.

Ok, so it's not exactly adventure holidaying... but they like going to stay at a nice hotel and not doing much...



They had a good time... and I hope they keep going away as much as they can.



My mum says she wants to be around for their next (30th) wedding anniversary next June (25th)... and we're holding her to it!



It's strange though... what happens with my mum will obviously dictate my plans for next year - Thailand in January, gigs next summer - I can agree to it, and show interest in it, but I know I might be a completely different person by then.



Anyways... that's all for now... thanks for reading...



And I hope those of you who have posted and are dealing with similar issues are doing ok...



love and hugs from Belfast



hug2


Getting to the other side smile


Skulduggery
Skulduggery

Pirate Pixie Crew Captain
Location: Wales
Member Since: 12th Aug 2004
Total posts: 8428
Posted:Thanks for the update Clare.

Maybe to make your dad feel a bit less left out you could arrange to take him out for a special treat to do something he loves.

I hope your mums good spirits win out over the dodgy day spirits. She sounds to me (from what you say) like she pretty much has life in perspective.

hug2


Feed me Chocolate!!! Feed me NOW!


_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:Quick update...

My mum goes for her scan tomorrow morning (Tuesday), so we'll know in a couple of weeks whether the tumour has grown, shrunk or stayed the same.

She's feeling grand about it... Dad brought her out to see the ballet tonight (ohhh, posh)... which she loved, and she was really upbeat when I phoned earlier.

Dad is a bit more subdued... but doing grand too.

Ok, will let you know...

xx


Getting to the other side smile


Brenn
Brenn

Will carpal your tunnel in a minute.
Location: Melbourne, Australia
Member Since: 28th Jun 2004
Total posts: 3286
Posted:Best of luck for tomorrow morning, Clare. You and your family are in my thoughts.

hug


ॐ

Owner of burningoftheclavey smile
Owned by Lost83spy


Skulduggery
Skulduggery

Pirate Pixie Crew Captain
Location: Wales
Member Since: 12th Aug 2004
Total posts: 8428
Posted:Ooooooooooo The Ballet, very posh indeed biggrin

I hope tomorrow shows the tumour has shrunk hug

How are you holding up? Still smiling I hope!


Feed me Chocolate!!! Feed me NOW!


_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:I'm grand thanks (well, I'm ok anyways)... and thanks for both your wishes...

It'll be a couple of weeks before the results are through though...

hug2


Getting to the other side smile


_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:WOOOOOOOOOOOHOOOOOOOOOOOOOOOOOOOOO

YEEEEEEEEEEEEEEEEEESSSSSSSSSSSSSSSSSSSSSSSS!!!!!!!!!!!!

bouncebouncebouncebouncebouncebouncebouncebounce
bouncebouncebouncebouncebouncebouncebouncebounce


Mum got the results through from her scan today!!! (uber quickly)

They show a REDUCTION in the tumour!

Ok, it's only a tiny reduction... but at least it hasn't grown and become bigger!

So, they're going to keep her on the chemo for a while longer... see how it goes smile

Hurrah!!!

Clare x


Getting to the other side smile


faith enfire
faith enfire

wandering thru the woods of WI
Location: Wisconsin
Member Since: 27th Jan 2006
Total posts: 3556
Posted:every shrinkage no matter the size is great

congrats


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


The Tea Fairy
The Tea Fairy

old hand
Location: Behind you...
Member Since: 2nd Jul 2004
Total posts: 853
Posted:hug Glad it's good news. Sending out my love to you and your family.

Idolized by Aurinoko

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

Bob Dylan


Birgit
Birgit

had her carpal tunnel surgery already thanks v much
Location: Edinburgh
Member Since: 27th Jan 2005
Total posts: 4145
Posted:yay smile

I'm so happy for you! hug

Btw, just received my COL and saw your video, very pretty 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


poig
poig

marmite and nutella sandwich
Location: Farnborough, Hampshire
Member Since: 19th Jun 2006
Total posts: 1590
Posted:ubbrollsmile bounce bounce2
I feel so happy for you


THE hop Pyro.
(with parents)
Unowned


coleman
coleman

big and good and broken
Location: lunn dunn, yoo kay
Member Since: 29th Aug 2002
Total posts: 7330
Posted::hug

that's absolutely *great* news clare hug2 hug hug2


cole. x


"i see you at 'dis cafe.
i come to 'dis cafe quite a lot myself.
they do porridge."
- tim westwood


Spanner
Spanner

remembers when it was all fields round here
Location: in the works... somewhere...
Member Since: 27th Feb 2003
Total posts: 2790
Posted:I have a big smile on my face right now smile
Well done - to all of you as well as your mum.
I know it's not always easy but I've been so inspired by the positive attitude you all seem to share and results like these surely prove that it's always worth looking on the brighter side sunny
hug grouphughug2


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

yay,

:R"


BansheeCat
veteran
Location: lost
Member Since: 29th Jul 2005
Total posts: 1247
Posted:Yay!!!!! ubbrollsmile kiss biggrin biggrin biggrin bounce2

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


jo_rhymes
jo_rhymes

Momma Bear
Location: Telford, Shrops
Member Since: 10th Apr 2005
Total posts: 4525
Posted:yay! it's shrinking! wooo!! nice one Mum! xx

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


Glåss
Glåss

The Ministry of Manipulation
Location: Bristol
Member Since: 8th Nov 2001
Total posts: 2523
Posted:Good news. smile
hugs
Drew



Skulduggery
Skulduggery

Pirate Pixie Crew Captain
Location: Wales
Member Since: 12th Aug 2004
Total posts: 8428
Posted:Clare your mum rocks!

Positivity and drugs combined are a powerful thing.

hug Yay!


Feed me Chocolate!!! Feed me NOW!


Neon_Shaolin
Neon_Shaolin

hehe, 'Member' huhuh
Location: Behind you. With Jam
Member Since: 13th Jul 2005
Total posts: 6120
Posted:See?

Never Give Up! Never Surrender!

May it only get better from now on...

hug


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


SunnySammy
SunnySammy

Watching the Sky
Location: Cambridge(ish)/Bath Spa Uni
Member Since: 22nd Aug 2005
Total posts: 453
Posted:Congrats missy! hug

sunny
I jumped into the river, what did i see?
Black-eyed angels swam with me. wink


fNi
fNi

master of disaster
Location: New York
Member Since: 8th Mar 2004
Total posts: 3354
Posted:great news hug hug

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


Nonky
Nonky

member
Location: Belfast
Member Since: 8th Jun 2006
Total posts: 44
Posted:Ah Clare that's brilliant news! I am so glad that things are improving smile xxx


_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:Tis good news indeed smile

Thanks everyone for your warm wishes... tis great.

It's only a slight reduction now... and I know pancreatic cancer is pretty lethal, so we're not expecting a miracle or throwing a party, or anything... but it's still good that it's going in the right direction.

smile


Getting to the other side smile


_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:Meh... shoulda known it was too good to be true...

Went out for dinner with my parents and brother last night.
As we were sitting down, my mum said: 'yes, on wednesday they told me the tumour had reduced a tiny bit in size... oh, but during the scan they also found little bloodclots on my lungs'.

She decided not to tell me about that because I was working in Dublin on Thursday and 'it didn't really matter'.


Argggghhhhhhhhh...!!!!


Ok.... so then, it seems that little spots have appeared on her lungs.
The doctors don't know where they have come from, or what they are related to, but they are making her very short of breath.

This is what worries me now - my mum had a heart attack about six years ago, and the shortness of breath could trigger another one... it could be that which takes her more quickly.

frown


Getting to the other side smile


Durbs
Durbs

Classically British
Location: Epsom, Surrey, England
Member Since: 23rd Sep 2001
Total posts: 5687
Posted:frown

hug

This the "platelets" thing she mentioned when we saw her?

Uber-hug's


Burner of Toast
Spinner of poi
Slacker of enormous magnitude


_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:No, that's another thing.

Apparently the chemo treatment has left her platelets low - which I'm told leaves her more open to infection...

Le sigh...

frown


Getting to the other side smile


faith enfire
faith enfire

wandering thru the woods of WI
Location: Wisconsin
Member Since: 27th Jan 2006
Total posts: 3556
Posted:as bad as the platelets are-i think that is sort of normal, so they may try some steroids, at least it always seems to happen when one of my family members get diagnosed(not infrequently)...
you can't do steroids and blood thinners at the same time can you? don't they do the opposite thing or something...
is there a doctor around here

well hugs and prayers with you and your family


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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