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Bone mets - please join in

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Re: Bone mets - please join in

Evening everyone

Today was my first day back at work for nearly six weeks and with the exception of travelling in the heat I thoroughly enjoyed myself today and managed not to talk too much about what has been happening. I actually felt normal. However, I had a CT scan yesterday, bone scan due tomorrow and now awaiting another MRI as still have hip pain 3 months on from my rads and the anxiety is creeping back. I have also have very tight chest which Onc said could be due to my recon but worrying It may be something else. Just putting it all in a post
Makes me feel a bit calmer

Wendy
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Proton beam therapy is the treatment that some parents removed their son from hospital and took him to the Czech republic for. The authorities in this country tried to stop them but as far as I can remember he is better.

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Very impressed, Carolyn! Thanks for saving us all the trouble of Googling it!

 

Jellytot - glad your first lot of rads is out of the way. Good luck with the temporary residual pain (that Carolyn warned you about), and good luck with the Daily rads to your chest. Congratulations on being an Aunty (a painful thing for you, I know).

 

Hugs to all. Barton.x

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Just googled proton beam therapy ..it's a targeted form of rads ...not widely available here but two hospitals Manchester and London will hopefully be getting it by 2018.
Jury's out online whether conventional rads are more effective though.
That's my intellectual bit for the day ladies .
Impressed ?
Hugs ☺☺
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Hello ladies
Just read on Google that Olivia Newton John has secondary bc in her sacrum after her primary 25 years ago ..phew that's a long time for the little blighters to lay in wait !!
Shes having proton treatment ( will have to Google that) but I expect that its a new expensive treatment that isn't available on nhs yet .
Oops sudden thought a lot of you younger ladies won't know her ...think Grease and John Travolta days ...
Hugs xxxx
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Pippin

 

here s a link to EFT demo

 

http://eft.mercola.com/

 

I confess I had a few sessions with a trained practitioner..but actually, you dont need that...its all in the demo...and then if you keep at it...things do improve....

 

good for acheivng goals

relieving stress

working on pain etc

 

see what you think and then decide on your choices. Xx

 

obviously its not a cancer cure...but it  helps me to. Cope with the bc

 

Moijanxxx😎

 

 

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Hello jellytot
Well done for getting through the first nuke zapping today ..you might feel a bit of pain for a few days but it will help.
Congratulations on being aunty jellytot ..but it will rub salt in the wounds ....you must now focus on spoiling the new little one and offer loads of cuddles and auntysitting!!
Hope the next four weeks of zapping goes quickly for you .
Hugs xxx
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Hi Ladies, 

And so it begins! Just had my first rads, the one off blast on my hip. My knee is throbbing because I think it's overcompensating for my hip. I'm feeling emotionally drained. Tomorrow I start my 4 weeks every weekday of rads to my chest. Meeting with medical oncologist on Thursday to discuss hormone therapy and potential chemo.

In other news, I'm now an auntie. My brother had his first on Sunday, I'm feeling a bit numb about it tbh. I don't feel happy, nor do I feel bitter. I think my brain has gone into self-preservation mode....

xxx

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Hi Dragoncarine, Welcome to our thread. I was only diagnosed with secondaries a few weeks ago. Not prepared as I was about to be discharged after 10 years. But, it is what it is and needs dealing with. The ladies on here have a wealth of knowledge and in some cases many years experience. Once, you settle on to a treatment plan, things will seem better and we are alll here with cyber hugs, to listen to your worries. One thing I would suggest is to make sure you take someone with you to see the consultant to take notes. Much love xx

 

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Welcome, dragoncarine (would you prefer dragon or carine as the shorter name to type?), but sorry you have had to join us. You have come to the right place for friendship, humour, and as much advice as we can give!

 

You have been hit with a tremendous amount of information, and it takes a while for it all to sink in. Please read back over a few pages, and you will find that other "newbies" have found comfort in the fact that once you have a treatment plan in place you will feel much better (difficult to believe at the moment, I know). There are ladies on here who have lived full and happy lives since their diagnosis, and some for many years on maintenance treatments.

 

Please let us know how you are getting on.

 

Hugs. Barton.x

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I'm new to all this, still struggling to come to grips with it all. I'm not sure what to expect. Bone scan & CT scan showed up tumours on ribs, right shoulder and left upper arm, I think they said lumps on my skull may be cancerous too, but I can't remember. They also found areas on my lung and I believe tehy also said a couple of suspicious spots on my liver. I asked for report but in all the chaos forgot to ask again before I left. Have been put on Tamoxifen and starting Denosumab in a couple of weeks I think.

 

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Hi Moijan

What is EFT? How do you get on with it? Does it involve counting?

Pippin

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Moijan.
I bought the book the cancer whisperer ages ago and I'm afraid didn't feel very inspired at all by it ..I actually only took the book to the charity shop a few weeks ago ..you could have had it !
The fringe things are good ..back in the days when I had my chemo ..it was hot summer and wig got hot ...bought a fringe and ponytail on Velcro and used them under my scarves ..felt a bit less like a cancer patient with them !!!!!
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Prob talking too much her...but sat in Waterstones and read quite a bit of 'the Cancer whisperer' by Sophie Sabbage....was quite enlightening....that lady ended up with 27  brain mets I think she was a lungs primary lady who like us went through hoops with meds, she ...took charge of her care and they ( tumours)seemed to have gone.... Worth a readxx

 

 

also...have been wearing a fringe on a hairband from 'Heathers Hair' under my elasticated headscarf...looks quite real and much less hot than wigs....they are amazing at Heathers Hair

xxx

Moijanxx

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Pippin, yes, im sorry you have had the worry of another lump.

i hope it proves to be non cancerous.....You reminded me that I was doing my EFT last night to try and sleep......was tapping on the collar bone point on the side of the remainng breast and became aware of a line of tiny lumps nearby...could be defunct milk ducts, never found them before...but not that good at checking as have 9/52 MRIs....am not worrying, but that area is now sore from tapping!

 

i also had a tiny lump in my ear cartilage and two lumps( which look like ladybirds) in my umbilicus.....both gp and onc made nothing of them and the ear one has almost gone!

 

its a weird trip we are on, eh?

 

Moijanx

 

 

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Yes, hi to you too chocolates....seem to recall you posting since last year..and then hadnt seen you, but this is a big forum. I actually joined the forum in about 2002/3, but fell away and lost my log in and the had to re register last year again! Im a bit of a llong timer in that I found mt lump in 2001...... Actually was concerned about an abnormal crease in that breast in 2000, but was sent home with a letter i still have sqying "you will be pleased to hear, etc" when I fond the huge lump, the consultant lost his temper as I asked wether it would have been there the year before! Eventually  changed as the man had lost his appeal. So had a large lobular bc, tumour...pre op chemo, mastectomy, rads,12/13 lymph nodes positive so full clearance and more chemo and rads to armpit  also have lymphoedema.

 

went onto Letrozole for 7 years..told I could stop, apparently 3/4 cancer free years...then recurrence to bones and liver. In about 2013...... Now on the gravy train like most of us.......am on fourth chemo drug. - waiting to see what scans say as ? Progression.

 

anyway, it is nice to hear from ou Chocolatesxxx

 

Moijan💚💚💚

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Hello ladies
Pippin:
I have been on the same regime as you for 18 months and my biggest fear is it will stop working ..its quite easy to tolerate rather than the stronger stuff other ladies have to cope with. I do hope your new lump is just a boil /abscess or something ...a few days ago I found a lump in my groin area ..ignored it and buried my head in sand as usual ..when I had a prod ...it was a boil type thing and burst!! My knicker elastic played havoc with it !!
FF :
My friend in oz is feeling the same as you on the evorumus ...it must play havoc with mood etc.
Moijan:
Sorry about your car ..I'm a bit of a perfectionist ..don't like dents and broken things on my car so would be saying a few choice words !!
Jeanette:
I don't do mobility with my car but it was a good idea to go automatic ..we changed ours last October ..set out to buy automatic but that model was £4 k more so settled for a manual one again ...but I do manage ..just!.
Hugs xxxx
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Hi FF

I'm on letrazole, denosumab and calcium and vit D.

Pippin

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Pippin, I'm sorry to hear of your new finding especially on a long weekend. What treatment are you on? Have you been on it long?  I think my need to get away from cancer is partly how this drug is making  My head feel! Not sure if it's the targeted drug or the hormonal. I feel alone on them and they also make me to be alone. Trying to force myself not to hibernate! I have to fight this bc  I want to get my time out of this drug! I want  more years! Like all of us a do! All of these years living with a black shadow  over my head has become tiring! FF

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Hi everyone

I went for a 30min nap about 7pm and woke up just now! No even sure what day it is.

FF I understand how you want to get away from this cancer thing. I was beginning to tnink like that too. I occurred to me that I might have another 15 years and that thought was strangly scary. However at the beginning of this bank holiday weekend I found a new lump (not looking for it, it was just visible under my arm, - such timing!). Guess I'm back in the system on Tues. We'll see.

Pippin

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Hello Chocolates, Good to see you popping in and to know you are rolling along with this! Lol you can call me an old timer. I am one for being here so long and by age, also because of the creams, cracks, and groans when I move! Take care of you! Anything new or adventurous going on? FF

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Chocolates 

 

So nice to hear from you ...its been ages since we heard from you and its good that you are still well ...don't leave it so long next time before you pop in again.

 

Carolyn xxx

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Oh dear Nathali, my car was shiny newish and a bit boxy, but I liked it the way it was....not minus a wing mirror and with added adjusments to its shape! Could have done without it.

 

ladies, I reported it on 101 but thought more afterwards...Was it Crissy who said no claims wont be affected...sorry, but they always raise the charge and youd never know why. i know a really lovely, efficient panel beater who has quoted less than £1000 to me...but the first thing he said to me was...'oh, you couldnt have picked a worse colour  ....and I knew because id ordered  the car...and knew all about the different levels or layers of paint if this happened...and i said so to The dealers...but they said..oh, no, just quote the number...and I actually told them that it would be a problem...but decided to take it anyway...

 

well..its a problem..but what the hell, I can just about afford it now...but the bggr who did it...I missed his number plate as he sped off and i'd pulled into a lay by thinking hed stop -ba*t*rd....that he was.

 

the other thing I will say is that most of the chemos we are on - and also post rads.....its a bit risky to be in sun too much....I'm careful.

 

I too suffer from 'magnum' addiction but am fighting that one, as I told my wonderful  onc id try and have less sugar...and ladies...did you read the articles re alcohol for bc persons...this week?

 

apparently 1 glass of wine daily can up your recurrence risk by 15% and if you are already recurrent....by more. i just know many of you wont like it being mentioned,   ( i had two glasses at church last week) but 

i do think alc might add to the sugar load ..........anyway, you all know I care about all of us.......so do what you like X  But be aware!

 

 

much love and hugs

 

Moijanxx

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Hi ladies,

 

its lovely to see some long timers(nearly wrote old!) still on here mixed in with some I don't recognise but that's because I've not been on for ages. How are we all doing?

 

im doing ok - day by day - a few set backs but still working and keeping busy. Just wanted to let you know that although I'm not on very often now I still think of you all on a daily basis.

 

much love,

 

hxx

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Well, The predictive text sure gave every one a gigle or two, including me! 

 

I enjoyed a Magnum ice cream when we were in vacation, and a Klondike bar, and a chocolate chip cookie ice cream sandwich with m & m 's on it, and ......! I was a bad one!! I just don't buy that stuff because it would drive me crazy! I'm still working on this weight. I have made the halfway mark of what I think I want to lose. If I accomplish this it will be 110 pounds off! I actually lost a lot of weight back in 2011-2012 changed meds, gained it all back except 20 lbs. So from my heaviest I would have 130 off when finished. Losing the next half will depend on  my skin looks. I can't afford surgery to fix my skin. 

 

The drop reminds me of a Hershey Kiss! Big chocolate attack going on! Luckily no chocolate in the house! FF

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Afternoon ladies, hope you're all keeping well and enjoying the weekend. 

FF, I've never been to a "willy wedding"......that would be an experience! 😂

Weather a bit hit and miss here in Manchester today, still very warm though. 

Carolyn, I've also been at the Magnums.......love em! 

I'm off into Manchester City Centre tomorrow for a meal and a few cheeky cocktails and wine, it's our wedding anniversary Monday so meeting our son and partner. I am going to take some flowers to lay in St Anns Square for all those beautiful people who lost their lives last Monday, I'm still in disbelief that this terrible thing has happened! 

Hey, I forgot to mention last week that I got a shiny new car! Needed to change to an automatic as the clutch was playing havoc with my hip, motobility were really good about me swapping early, just told me to go and choose another car and I wouldn't be hit with an early termination penalty because I needed to change for medical reasons. 

Hugs Janette xxxx 

 

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Do you know what Crissy ..I don't really know what a community champion is really either.
When I was asked to be one ..I took the challenge as the only other thing I ever got was a swimming certificate when I was five for jumping in deep end holding my nose !!

It can't be for medical knowledge as I'm a really numpty ...but a lot of the CC here are very knowledgeable and always ready to offer advice as they have been living with secondaries for years and been there, done it and got the scars !!!
Diet ..what's that ..I see food and eat it ..somehow spinach and broccoli arnt the same as a nice Magnum or McDonalds !!
But I'm a bad example ...
Hugs xxx
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Hi Carolyn, 

I notice you are a community champion, whats that?

 

Oh sorry to hear that the rash is the meds. Perhaps I need to start getting a spray tan. I may have to pay double as there is a lot to spray. Or get actor 50 sun screen. 

 

Magnum ice cream, I love magnum ice cream.

I am trying to loose weight to take some of the strain of my knees and hip, which are arthritic.

When I was on Anastrozole I piled on the weight.  I was constantly filling my face with rubbish, comfort food,

I have stopped buying the temptations, like magnums, crisps and choccy bics. How long this will last is anyones guess, but I must give it a go. 

Just off to get myself a lovely apple without any toffee on it (lifts a bitch at times).

Take care xxxxx enjoy the sun in beautiful Devon. 

 

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Hiya crissy
It's nice to hear from you ..the threads go a bit quiet at weekend's ..busy ladies here.
Yes its the meds causing prickly heat ..I'm on leyrozole / denosumab ...back in the days I used to sit in Sun until I almost cremated myself ..now I'm fidgety and get prickly heat too.
Plus ...age too and the skin is thinner and more sensitive. The sun is out here in Devon with vengeance ..so I'm sat indoors with patio doors open and a nice breeze ..oh and a Magnum ice cream ....oink oink 🐷🐷.
When my Mets were dx ..they said they had been partying for many years and I put it all down to old age too !! But hopefully the letrozole will stop their partying for a bit longer .
Hugs xxx
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Now i've started you can't get me off here.

 

I sat in the garden for a couple of days this week and suffered for the first time with prickly heat rash. Which drove me mad all that itching. Took piriton which helped.

I even had the rash in places that had not been exposed.

I have never had to use sun creams before as I go brown quite quickly. I am on tamoxifen and have the 4 weekly injection of Denosumab. Not sure if I have developed a sun allergy or could it be the meds? 

 

One good thing about changing meds, I feel so much better since coming off Anastrozole, I didn't realise how bad the side effects were until about 3weeks ago, after being of them for 4 weeks.

The aches and pains  and stiffness in all my joints, (except the arthritic ones which are not as bad as they were) has gone. No side effects with Tamoxifen or injections so far. Fingers crossed.

 

Hope you all have a great weekend, it's just started raining in Birmingham xxx

 

 

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Hi Stripey, I joined the group a few weeks ago. I think the first post of mine went itno detail.

It was a great help putting all that's happened down on the forum. I felt a great sense of comradery with people who understand what we all are going thru. I think I am one of the oldest on here at 68, primary in 2013 secondry bone diagnosed about 7 weeks ago. 

I went for my annual mot in march and went for the results 2 weeks later. The mammogram was fine.

I told my oncologist that I was having problems with my right hip and my doctor said it was arthritus. My oncologist sent me for a bone scan to check that it was.

The result was that the hip was infact arthritus but my spine and scull showed bone cancer. Whiich she said had probably been there 2 years. I just put the achy back and neck down to old age.

The time it had been there and the end of my breast cancer treatment it appears that I was only 18months free of cancer. My oncologist said that sometimes it doesn't put markers in the blood until it has established itself.

I was a mess until about a week or so ago and got up one morning and felt that life had gone back to being normal. I haven't cried or felt sorry for myself for days. People on the forum said it would come and they were right. (no antidepressants)

See what happens when you get started writing on this forum, Its theraputic. You just get carried away.

I pop into the forum every few days to see how you are all doing.

Thanks for being out there, Love, hugs and kisses to you all xxxx

 

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Me too - Willie wedding! Ha!

 

Moijan - I know it's a horrible hassle that you could do without, but I think you really ought to report the accident to your insurer and definitely the PO - he should not be allowed to get away with that!  Anyway, it's up to you, and I know how irritating dealing with insurance companies can be. Best of luck, whatever you decide to do.

 

Bon - love the "drop". I had mentioned the Delamore exhibition to my sister the other week, but she has been before and didn't think a great deal of it, so we didn't go.

 

Hugs. Barton.x

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A willie wedding made me laugh. I think you must have been thinking about other things when you typed that FF. It has rained in the night, a bit misty but still lovely here. It's good to see everyone living 'normal' lives. Maybe you're all Mancunians as well - no fear here. My main worry now is wearing the dress tomorrow as the weights sneaking up since I started on tablets. I was the same with Tamoxifen. Suppose I'll have to cut down on treats. X

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Hello ladies
Well u r all going to be busy at the weekend by the sound of it but someone has pinched the sunshine here today ..it's cloudy and drizzly !!
Ha ha FF. ..check your last posting ..the stupid predictive text has been in action again ..I'm trying not to imagine a "Willie wedding" ..too much excitement for a 64 year old !!
Enjoy the weekend everyone ...😃😃
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Hi Mojan

You must report the incident as your insurer will want you to do this anyway. If you are not at fault then your no claims bonus won't be affected. Take loads of photos of damage as you will be surprised what can be deduced from the way the damage was done and hopefully as accident was on dual carriageway there will be some cameras. The last thing you need is stress so report to police , post office and insurer and let them handle.

As for weather and wigs I can only imagine it must be unbearable so finding a solution is good news

Wendy



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Today I went to the art exhibition at Delamore House which is quite near Plymouth on the edge of Dartmoor with my dear friend Rosie. Much of the exhibition is in the garden so it was an absolute delight on such a lovely day.

Drop

This is called 'Drop'

 

Sorry to hear about your collision Moijan and that he drove off!

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Wellie wedding sounds cute. Writing and illustrating children's books! I'm impressed! Mine would be boring! No talent with words! Going off to a little cottage, very relaxing. Just going  to a picnic! Hoping for a sunny gardening day and want to do some power washing! It has been cold and rainy here for days!! Also had a few extremely hot days!  This week coming we are supposed to have some nice days! Very behind in doing outside work. Not doing a veggie garden this year. Need to make a better fence to keep the deer out. Last year they even ate my tomatoes. Money is short so hoping later in the summer that things might be better and maybe we can work on a garden fence for next year. Just going to have to play in my flowers. Have had a few fun times lately. We went away for our anniversary, then did the whale watch, baseball game and a picnic last weekend, surprise dinner Tues. night with my daughter's friend from Atlanta. (Our extra kid) He was about an hour away on business so called for all of us to meet for dinner. We don't get to see him very often, so if he is in the area we jump at the chance. We also have been going to a few parks, and just enjoying some little walks and a few snacks. We want to get out enjoying nature more.Have a good weekend!

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Moynihan, Report the accident to the police and postal service. The postal service should know who would be in that area and be able to check vehicles for damage. I agree wigs are to hot in the summer! I used to wear just a bandanna on my head. I went to a store and bought them in the men's department. I had a rainbow of colors. We have a picnic on Sunday. It's a holiday weekend here, so no work on Monday! I also don't work Tues., so a 4 day weekend.

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Just want to say... no, I haven't got exciting plans for the weekend! I also want to share that wigs are so very uncomfortable in this weather.... have recently got two innovative hair ornaments from the charity Heathers Hair. This means I can wear a fringe and sideburns under a headscarf or a sun hat, instead of boiling over.

The other thing I want to share is that on Wednesday I was on my way to the hospital to get my blood test done and on a dual carriageway... a blasted, stupid post office driver pulled out without looking and damaged my car... which I've had since January, is only three years old and had looked very nice prior to the accident... the driver did not stop and as I'd pulled in to a lay by to talk to him, he sped fast in the outer lane and I missed his reg number.

So basically a careless inscrpulous man ruined my day. And cause me stress.

Moijanx
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PMOL, France! Carolyn, Devon! Suzy, Wales! Wendy... Sainsbury's! I believe it's very pleasant this time of year though, plenty of air conditioning, BBQ charcoal and ice cream. Enjoy! Xxxx Hope your mind isn't on the scans too much Wendy. Xx

PMOL, what a bloomin' great sounding project. How old is your daughter? I love this idea, such a lovely idea. Are you an artist?
I'm not! My dad is though so I'm writing and he's illustrating. I'm researching childhood chronic and life limiting illness and we'll see what comes. I always wanted to write a children's book or 10, so I'd better get a wriggle on!

Suzy! Your feet will be so hot in wellies!! Sounds like a brilliant wedding though, I'm having a clothes give away next week and am giving away every pair of high heels I have. I rarely wear them and think they're a bit bloody stupid anyway. Life it too short for sore feet and I love to dance with abandon anyway! Hope you have lots of fun.
I love a canal boat, my husband Barry want to own and rent one out. Rashly I told him the night before my big appointment, 'love if it's spread, you can get a houseboat'!!! Oops! He was googling them that night... Every cloud...!
We have no money but he has a small gardening business that he'd like to sell so we can move back up home.

Okay, it's time to move before I nap again.

Take care and all the best everyone xxxx
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Hi all

You all sound like you have really exciting things to do this weekend whereas I am off to Sainsbury's and the hairdressers. I am back to work next week so trying to get back to normal although an awaiting dates for scans and ongoing recon appointments.

Enjoy the weather . It is glorious here in Greenwich.



Wendy



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Morning ladies, off to a cottage in Wales today, when I get my act together. Having a slow morning and didn't help forgetting to take my lenses out! 

Enjoy the lovely weather. We're booked on a canal barge ride tomorrow and a welly wedding on Sunday. Got my sparkly wellies ready but don't really want to splash them so hoping rain will stay away. 

Have a good weekend everyone xx

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Good morning all
Hope everyone is waking up to the sunshine this morning ..it's really hot already here in Devon ...to hot to stay in bed!
Stripey ..no fake tan for this girl ..too many wrinkles for it to hide in !!
Enjoy the sun xxx
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Hi girls - loving the weather!!! Think it's probably the first time I've been out without a jacket! 🤣
Stripey enjoy Scotland! I love it and try to go every couple of years at this time although this year we are going to France. What kind of book are you illustrating? I'm starting some short stories about a Girl and her dog with help from my youngest daughter as it's her story. Anyway better sleep.... xxxxxx
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London sure is hot isn't it Wendy? I'm in N16.

I just plastered on fake tan for the first time in a long time... It's sliding off already! I have 2 fans on but I can feel a hot flush heading this way...!
It is nice to know there are people RIGHT HERE who know how all this feels (I don't mean the sliding tan, although maybe you do?!).

Ha ha!! I'm loving the expandable hugging.

Iced buns... The M&S one is my ultimate favourite. It makes car journeys worthwhile!

I hope people have some nice weekends lined up? I'm going up to my folks in Scotland... First time we'll have had a cuddle since I got the news the other week. Half dreading it, half excited.
My dad and I are working on a children's picture book together though so hopefully that'll be a good distraction.

Happy end of the week to you all gals. Xxx



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Hiya ladies new and old ...we love new postings on here as we all get dark moments and its nice to share with real people that understand .
I think a lot of our family / friends are fooled into thinking we pop a pill or have rads/ chemo and we are all sorted !!
Thanks Barton for your friendship too ..and a partner in crime that enjoys cheese scones and iced fruit buns !! They say that age is just a number ...well so is size !!!!
Loads of big and small hugs from my special hugs cupboard to everyone xxxxx
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Re: Bone mets - please join in

Stripey, the hug expands or shrinks to fit all sizes! I'm sure you aren't as big as me (no, I am NOT saying!).

 

 

I think you hit the nail on the head re worrying - not only do we have our own symptoms, se's and treatments to worry about, but we also have to be careful about how much we share with our loved ones. It is a strain sometimes. I have found a good friend in Carolyn on this site, and we meet for coffee (and "extras"!) quite often. As we are in a very similar situation, we share a lot of stuff and get a lot off our chests, that we couldn't do with relatives.

 

 

Like you, I don't have children, for which I am extremely grateful. I can't imagine the worry of their futures.

 

Hugs (expanding ones, if necessary), and best wishes. Barton.x

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Re: Bone mets - please join in

Oops meant rads. Too quick on the post button 😄