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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
Posted:Hello everyone...

Oks, well, I've had some bad news and thought I would post on here for advice on alternative therapies.

I've had a look through the existing threads (nice search system Malcolm!!) but didn't find what I was looking for, so I hope this is ok.


So then...

Just over a month ago my mother turned yellow.
It was two days before my parents were due to go on holiday, and instead she ended up in hospital.

They discovered it was a blockage near her bile duct, and after sticking a camera down her throat, found out she had a tumour on her pancreas.

She was eventually sent home for a few weeks to recuperate, then brought back in for an operation last Friday.

We discovered then that the tumour on her pancreas is too big - 6 cms - to operate on, and parts of it have spread to nearby glands.

The prognosis isn't good. They've told her between 6 months and a year, but any reseach I've done shows people with pancreatic cancer lasting between 4 - 6 months.

Our family is coping well, considering, so far.

(Personally, I feel like I'm constantly going to cry.
I try not to think about her leaving us as much as possible. My mother is the strongest person in the world... She is kind and lovely and despite having pissed me off often, has done a splendid job and has had a splendid life (she's travelled all over the place - took a boat to Australia from Ireland 40 years ago to work as a nanny on a cattle ranch!! She came home, by boat, via NZ, Fiji and the Panama Canal - in a time when tourism wasn't Lonely Planet travel-by-numbers).

At the minute, I'm coping. I'm finding myself running about my parent's house 'doing stuff' for them while also trying to keep a performance business afloat. That's been a barrel of laughs in itself... anyone setting up a business in the arts - prepare yourself now for the bitchiness, competition, jealousy and lack of support.

My deepest apologies to m'lovely friends on here if I haven't responded to your PMs or calls recently - thanks BamBam and Fluff x).

Jesus... that was a bitter and twisted rant... humblest apologies for that... redface

Anyways... I have posted this for a reason rolleyes smile

The doctors are still deciding whether mum should have chemo.
None of us are very happy with that idea... don't want her last few months to be spent throwing up.

She's got a very strong Christian faith, which keeps her bouncing through each day (lol, and she keeps emotionally blackmailing me to convert!!! Lol... I've told her it won't happen, but thanks anyway smile )

But I want info on alternative therapies... things that might reduce it, or just prolong her life for a bit. Does anyone here have any advice on where I could look?

I know not to accept intershnet advice as gospel, but it's good to get a guideline - or a point in the right direction.

Electro-magnetic therapy? Acupuncture? Organic foods and no tap water?!!

Does anyone here have any helpful hints?

Thanks so much for your time... and go home tonight and give your parents a hug... they could be gone much sooner than you think.

Love and hugs to you alll
Clare xx


Getting to the other side smile

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Birgit
BRONZE Member since Jan 2005

Birgit

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

Total posts: 4145
Posted:Hey hun hug

Would a zimmer frame help her, or are her arms to weak for that? Just a thought... because my grand-uncle had a really cool one (as those things go), it had a seat on the other side so he could sit down when the ways were too long.


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

Owner of Dragosani's left half

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faith enfire
BRONZE Member since Jan 2006

faith enfire

wandering thru the woods of WI
Location: Wisconsin, USA

Total posts: 3556
Posted:hughug
hug hug
hughug


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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Nephtys


Nephtys

resident fridge magnet
Location: Utrecht, The Netherlands

Total posts: 835
Posted:hug hug hug hug hug hug hug hug hug

everyone's unique except me

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
Posted:Ohhh.... zimmer frame is a good idea smile



Wonder if the hospice lady can get one... hmmm



Thanks ladies smile hug


Getting to the other side smile

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georgemc
BRONZE Member since Oct 2006

georgemc

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

Total posts: 2387
Posted:Clare a thought about your friends having had enough when they haven't said - you might be reading too much into things.
By your own admission, you are in a fragile state right now - it's entirely possible you are over analysing yourself and thinking that if you were friend X you would have ahd enough of Clare by now - but hey, until they say it, they are still there for you. You are worrying for far too many people - stop it! spank worry for yourself only.

Your Mum's at peace - great. Then stop worrying for her. Stop worrying for your Dad. Stop worrying for your friends - you'll worry yourself away from everyone that cares and matters. Don't worry and just "try" to accept.

Accepting can be hard for most people, but actually it's just a case of my new favourite saying - "Touch your nose".


Written by: Doc Lightning talking about Marmite in Kichi's Intro thread

I have several large jars of the stuff. I actually like it... a little. And don't tell anyone I admitted to it.
grin

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
Posted:Yep, I completely agree I read to much into things...

(many experiences of finding out afterwards that I had reason to be paranoid rolleyes)

But, (again through previous unpleasantness) I don't ever want these friends to have to tell me to go away... I like them too much to want to put them in that position.

I'd prefer to just retract from everything right now and save them the uncomfortable situation.

It's not a bad thing, it's just the way it is (and maybe I'll still have friends by the end of it biggrin)

Can't stop worrying about people, friends and family... I'm female, it's what we do smile

x


Getting to the other side smile

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georgemc
BRONZE Member since Oct 2006

georgemc

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

Total posts: 2387
Posted: Written by: _Clare_


Can't stop worrying about people, friends and family... I'm female, it's what we do smile


Well .... stop it!! spank

hug grouphug
George


Written by: Doc Lightning talking about Marmite in Kichi's Intro thread

I have several large jars of the stuff. I actually like it... a little. And don't tell anyone I admitted to it.
grin

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
Posted:ubblol

Oh, well, since you put it like that....

tongue

Thanks though

hug


Getting to the other side smile

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bender
GOLD Member since Nov 2001

still can't believe it's not butter
Location: Melbourne, Australia

Total posts: 6979
Posted:when i was really ill the biggest happiness was all the care lavished on me by special people.
smile


Laugh Often, Smile Much, Post lolcats Always

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newgabe
SILVER Member since Mar 2005

newgabe

what goes around comes around. unless you're into stalls.
Location: Bali, Australia

Total posts: 4030
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....

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georgemc
BRONZE Member since Oct 2006

georgemc

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

Total posts: 2387
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

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
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

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Helen_of_Poi
SILVER Member since Apr 2004

Helen_of_Poi

lapsed spinner
Location: Dublin, Ireland

Total posts: 412
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

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
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

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Helen_of_Poi
SILVER Member since Apr 2004

Helen_of_Poi

lapsed spinner
Location: Dublin, Ireland

Total posts: 412
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

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Skulduggery
GOLD Member since Aug 2004

Skulduggery

Pirate Pixie Crew Captain
Location: Wales

Total posts: 8428
Posted:hug
*runs off to chat to Jonny about something*
biggrin


Feed me Chocolate!!! Feed me NOW!

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Spanner
BRONZE Member since Feb 2003

Spanner

remembers when it was all fields round here
Location: in the works... somewhere..., ...

Total posts: 2790
Posted: Written by: georgemc


Your Mum's at peace - great. Then stop worrying for her. Stop worrying for your Dad. Stop worrying for your friends - you'll worry yourself away from everyone that cares and matters. Don't worry and just "try" to accept.

Accepting can be hard for most people, but actually it's just a case of my new favourite saying - "Touch your nose".



I think you've put your finger on what I would've like to have said, but I didn't want to be misunderstood as saying "just deal with it" - I've also learnt of late that it's possible and surprisingly beneficial to be able to acknowledge something isn't fair, or right, but while also "accepting" it as well.

Was so lovely to speak to you the other day Clare, hope you're having a great weekend hug


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

yay,

:R"

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georgemc
BRONZE Member since Oct 2006

georgemc

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

Total posts: 2387
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

Delete

jo_rhymes
SILVER Member since Apr 2005

jo_rhymes

Momma Bear
Location: Telford, Shrops, United Kingdo...

Total posts: 4525
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.

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georgemc
BRONZE Member since Oct 2006

georgemc

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

Total posts: 2387
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

Delete

pricklyleaf
SILVER Member since Mar 2005

pricklyleaf

with added berries
Location: Manchester, England (UK)

Total posts: 1365
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

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
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

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georgemc
BRONZE Member since Oct 2006

georgemc

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

Total posts: 2387
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

Delete

_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
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

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Skulduggery
GOLD Member since Aug 2004

Skulduggery

Pirate Pixie Crew Captain
Location: Wales

Total posts: 8428
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!

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
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

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Birgit
BRONZE Member since Jan 2005

Birgit

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

Total posts: 4145
Posted: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

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Spanner
BRONZE Member since Feb 2003

Spanner

remembers when it was all fields round here
Location: in the works... somewhere..., ...

Total posts: 2790
Posted: Written by: _Clare_


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



Argh... footinmouth I don't think that's quite what I think wink
I don't expect you to "just" deal with it because you have to: I wouldn't have a clue about where to start myself, so I wouldn't dream of telling you it's that easy.
I think what I'm trying to say is that not only do we hope you can accept it, but also that we're more than willing to help you get there in any way we can smile

 Written by:

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




The past few days have been like that for me too cool
I'm glad your weekend was good as well, speak soon lady hug


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

yay,

:R"

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_Clare_
BRONZE Member since Oct 2002

_Clare_

Still wiggling
Location: Belfast, Northern Ireland (UK)

Total posts: 5967
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

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jo_rhymes
SILVER Member since Apr 2005

jo_rhymes

Momma Bear
Location: Telford, Shrops, United Kingdo...

Total posts: 4525
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.

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