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Bone mets - please join in

roxy12
Member

Re: Bone mets - please join in

Rest in peace Val. We will all miss you. Xx

Smartie
Member

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So sad to hear this news you were a great help to so many of us. RIP. Smartie x

vercors
Member

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This site will never be the same without you Val; you gave us hope, you helped us make sense of this awful disease, you made us laugh with your gormeless shopping. I am sorry I never get to meet you in the flesh. Those cyber discussions will always stay with me. 

You are free of pain, rest in peace lovely ladies. 

xxx

 

2catlady
Member

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So sad to hear this news .Val was a wonderful lady who gave support to so many.
My love to Val's family,Helen xxxxxxxxxxxxx
belinda
Member

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Rest in Peace now Val, you gave so much support to others.
X
pumpkinsue
Member

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I would just like to say how sad it is to hear about Val!   She  was an inspiration to so many I am sure.  I have read her many posts and found them comforting and so informative.  

 

I wish all her family the very best!

 

Sue XXX

jannyjan1
Member

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So sorry to hear of Val's passing, Condolences to her family and friends. Goodbye Scottishlass Heart

Tinkerbelle
Member

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Thank you for sharing the news Peacock.

 

I am so very sorry and sad to hear this.

 

Val was a beacon of light for so many on the forums.  I know she gave me hope when I thought all was lost.

 

My love and thoughts are with her family at this very sad, time.

 

Goodbye Val

 

Tink x

peacock
Member

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With the families permission, I'm very sad to say that Val passed away on Friday, at home with her family around her.

Her funeral will be on Friday at noon, for anyone with her FB page there is more news on that given by one of her daughters.

RIP Val

pollym
Member

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Thanks Helen and Julie.   The radiologist suggested the pet/ct scan repeat in 4-6 months.  I'm sure you're right, anything really sinister they would have maybe done something else and sooner.  I'm just a worrier!  I have a lot of family with arthritis too!  I suppose I was thinking they could tell if it was arthritis.   Anyhow,   I'll let you know how it goes.

 

Thanks again for your replies.   I hope you're both doing well and send my love to both of you.  You ladies on these boards really are inspirational in your care and support for others at what are very difficult times for yourselves.   Take care  xx

 

 

JulieD
Community Champion

Re: Bone mets - please join in

Hi Polly,

Your worries are just as valid as any of ours so please don't feel you have to apologize for seeking help.

As Catlady said, it would seem your team aren't too worried so try to take a little comfort from that, it can be difficult to read scans sometimes so it could well be arthritis. Have you had a bone scan at all? It might be worth asking your team if that would be a useful test for you to have, different scans are better for showing some things better than others. I do hope all turns out ok and it's 'just' more arthritis, do let us know how you get on. In the mean time try not too worry too much and remember we're here if you need us xx

2catlady
Member

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Hi,pollym,I do know arthritis can show up as suspicious on CTs .i would say don't worry but that's a daft thing to say as you can't help worrying. If they haven't given you another scan since December it doesn't seem to be worrying your docs. I would have thought they would have you in for a bone scan very quickly if they were worried.sorry I'm not much help.
Sending you a huge hug and take care,please let us know how you get on,Helen xxxxx
pollym
Member

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Hi ladies, I am waiting for an appointment for a repeat pet/ct scan.  On a scan in December I was found to have a suspicious lesion/increased uptake on my right iliac crest which is in pelvis.  Numerous sites of arthritis were also found.  I've had no obvious pain in my pelvis but am getting all worked up over this.  I know all you ladies have very real things to worry about and I feel a real wimp.  In your experience is there anything else it could be apart from a bone met?  I keep thinking that as they diagnosed other sites as arthritis that it is unlikely to be this.  Thanks in advance for any help and best wishes to you all.

XX

 

2catlady
Member

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Hi,julesie,thank you for the update on val.like all the other ladies I was worried we had had no news. So glad she's feeling a bit better. Sending lots of love and hugs her way,Helen xxxxxx
Julesie
Member

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You're welcome. Val is an absolute legend to all of us with secondaries and does so much to give us hope. x
livlassie
Member

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Julesie , Thanks very much for that update and i'm glad that Val is feeling better. Although i have never met her, i have such admiration and affection for her. I rarely post but often lurk, i'm afraid! Thanks again x

madge1
Member

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Hi Desi-2,
I was on Letrozole for 8 weeks, but my symptoms became worse, I was given a one off radiotherapy treatment to my affected rib for pain management and commenced on capecitabine. I am seeing my oncologist tomorrow for review and for my 3rd cycle of chemo. I did have problems with sleeping and still do and also joint pain, sorry that I can't be of much help!!!! Have more side effects on the capecitabine!!!!!
Julie x
Julesie
Member

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Hi livlassie
Someone has just posted an update on Val in another group to say that she's been in hospital for a blood transfusion and bone strengthener and although she is tired and sleeping a lot that she is feeling much better. Xx
livlassie
Member

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Does anyone have an update on Val? Like many others, she calmed and supported me when i first came on here and was completely inspirational. I don't mean to pry but any information about how she is would be very gratefully received. Good wishes and all my kindest thoughts to you Val. xxx

livlassie
Member

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I was on Letrozole for over two years Madge. In the beginning i did experience an increase in pain around the back and pelvic areas and all the other mets areas really. It did get better with time and after two years it was difficult to know how much was mets pain and how much was being caused by the Letrozole. The worst pain was in my thumbs!!! That was pretty persistent and led to loads of broken crockery.  Itried to imagine my joints and bones as a huge building site, with lots of structural shoring up going on. That made it easier - more constructive and positive, for me anyway,

Desi-2
Member

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Hello Madge I'm wondering how you are getting on with the letrozole . I started it end of December and immediate sleep problems severe back pain bout 3weeks ago which has settled a bit and the expected jiont pain. Xx
Porkie
Member

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Dear Val - I echo the thoughts of others. You were an inspiration to me when I was first diagnosed. I do hope you are comfortable with your family around you. With much love xx

spookymoo
Member

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Dear Val so sorry to hear that you are poorly. As a "lurker"on the secondary site, I 

miss your wise words, knowledge and forthright attitude. I hope the medics are able to sort you out and that you are well soon. Keep fighting, Val -we can't lose you.  Sending light and love. Emma x 

 

myfanwy18
Member

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Val, how are you?  Site so quiet.

 

Hope you are with your loved ones and comfy.

 

Thinking of you.

 

Much love, Claire

helen44
Member

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Just back from a CT scan, waited ages, the hospital was manic this afternoon!

Sending lots of love & hugs to you Val & everyone on here xxx

Steris
Member

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Hello ladies

I spoke Val later Saturday evening and she wanted me to let you know that she's been having a rough time. She told me she thought that this maybe it and she's taking each day as it comes.  Val said that she made of sterner stuff and she's hanging on in there.

 

Val told me that her GP has taken over all her care at present and has taken her off most of the medication she was on.. He has reduce her pain killers and nerve meds too.  She feels that she was 'toxic' with all the medication and chemo's shes been on and has felt better since.  Val said she has a real connection to the GP and he reminds her of her husband mannerism. He has organised all equipment Val needs a hosptial bed with ripple mattress which she says is very comfort and other aids.  Val said she very unsteady on her feet at the moment. (Her husband's a real gem and through Val's post/chats sounds a star)   What is rare is he's been visiting Val every day; something that doesnt happen in this neck of the woods,

 

Val has her daughter's with her and they sound amazing girls and have really been looking after their lovely mum. She feels well supported and loved by her girls and her husband.

 

Val wanted me to let you all know that she is thinking of you all and sends her love.  I think I only managed to get through because one of the girls picked up my message.  She said she hasn't used her phone much and the battery has run down.

 

I feel very privileged talking to Val, we had a giggle and in all the years we've been 'chatting' it was the first time we spoken.  

 

A massive wrap around hug for you lovely ladies.

 

Love

Chris xxxx

 

 

Buffy3
Member

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I am sorry to hear you ate struggling too. You gave me so much hope when I was diagnosed nearly two years ago now. Sending you a huge cyber hug and healing vibes. All my love Mel xxx
nicky08
Community Champion

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Dear Val, one of wonderful 'buddies', I'm so sad to hear you are struggling so much but as the other ladies have said you have been such a huge inspiration to us all over the years and I just hope we can help or inspire you to gain some strength to help fight the little uggers. Sending you lots of gentle hugs and hope that you are able to post again with some news of getting stronger. Thinking of you, and also anyone else who is struggling at the moment.
Nicky xx

myfanwy18
Member

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Val, so sorry to hear you're struggling at the moment.  You have been such a light to me from my first postings on this site, your wisdom, warmth and honesty have helped me come to terms with this bloody crap disease.

 

I've just been told the BC is now in my bone marrow, had blood transfusion on Friday and start new oral chemo tomorrow.  Through your posts I'm determined to keep going, doing all the things I've always done and living - you've taught me that and to never to give up - make life difficult for the nasty little BC sods!

 

Much love to you and Chris.

 

Claire xx

2catlady
Member

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Hi,val,you are in my thoughts,sending you huge gentle hugs,Helen xxxxxxx
dawnhc
Member

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So glad you were able to talk to Chris and let her know just how tough a time you have been going through Val. Your GP sounds like he? is one of the old school - how things used to be when GPs had time to really show how much they cared for their patients. Let's just hope that he is getting it right and more importantly getting you back on your feet again. You are one heck of a lady - and been a friend to so many here over the years - now it's time to take it easy and let us all give back. Take care sweetie and be a good girl LOL.

Dawn

xx

belinda
Member

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Dear Val, thinking of you, with Love, Belinda. X
Porkie
Member

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Hi Val - you were an inspiration to me when I joined the forum three years ago so you are in my thoughts and I do hope you soon feel a little stronger. xx

pam01
Member

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Hi Val. Sorry to hear things have been so tough....but glad to hear they are a little better...and that both you and hubby have the support of your daughter. You have been an inspiration to many hundreds of ladies on this forum........over so many years!!! Thank you so much for updating us ....we can now support you by holding you in our thoughts and prayers. Many hugs.....Pamx

doodlecat
Member

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Hi Val, read an update from Chris.  Good to hear you are being well looked after.  Hope you get some energy back.  Take care.

 

June xx

Mema23
Member

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And we are all very glad to hear it. Much love, Marion xx
scottishlass
Member

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too tired to type but thought my days were up. Spoke to Chris and hopefully you will hear updates somewhere. Just popping in to say I am still alive....just!! Val xx

Buffy3
Member

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Lovely to meet you too. Its confusing with all my different names. xxx
JulieD
Community Champion

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Buffy, didn't realise who you were! Was nice to meet you the other weekend and makes me even happier to read your news Smiley Very Happy Enjoy the lovely sunnt wekend xx

Buffy3
Member

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Julie we met in the hotel at the meet up...I was with the younger girls...I left as you all went for dinner. I had the crazy curls and Clare had called my hair fuzzy like her dog and we were laughing loads. Mel
JulieD
Community Champion

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Smiley Very HappyGreat news Buffy! So pleased you are managing and enjoying work. Such stories give hope particularly to the newer ladies s thanks for sharing.

 

I'm actually early retired and it suits me. I think the important thing is to know that life dies go on after a secondary dx. At the time we feel scared and can see no future but there are lots of treatments out there and more of us living real lives with SBC.

 

Looks like it will be a good weekend weather wise so hope you'll all be able to enjoy it in some way xx

 

vercors
Member

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Woman Very Happy

Brilliant news Buffy. time for celebrations. 

XXX

 

vercors
Member

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2catlady
Member

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Hi,Buffy,FANTASTIC news ,that's wonderful. That gives me so much hope,thank you.
Huge hugs to you,Helen xxxxxxx
Buffy3
Member

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Hello lovely ladies, I haven't been posting because I've been back at work and getting on with life. I wanted to share my good news today which is I've been stable now for a year. Chemo finished Feb 2013, been on letrozole, zoladex and zometa for a year. I was diagnosed with double whammy in July 2012. bc+bone mets. Things have got easier and this is now the new normal. Xxx
belinda
Member

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Hi StayingHopeful, I'm sorry to read your Mum's news. I was diagnosed with breast cancer and bone mets together when I was in my early 40's. My hip spontaneously fractured so it was all a bit of a shock. But somehow life has gone on and at times I've had years of stability with effective treatments. I've now been living with this for eleven years, there are some good treatments out there, Best Wishes to your Mum and You.XX
LYNDYLOO
Member

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Morning Catlady

 

I noticed on the options you can send an e-mail. Would you not need my e-mail address for me to get a message.  Anyway hows had your week gone? Got grand kids today so better not stay on here too long. Take care keep in touch.  Linda

LYNDYLOO
Member

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Morning Nicky

 

Not been on for a couple of days.  Doing OKon E/E not had any side effect yet appetite and everything just the same.  I wonder how long it takes before you start getting any as it is over a week now.  Reading your reply your treatment does appear to be working and everything is stable.  Can I ask how often do they scan when you are chemo tablet to see whether it is working or not.  Looking after the grand kids today as it is half term 10 and 6.  So better not stay up here too long as they will be wondering where I am.  Take cared I will be on again over the weekend. Linda

Steris
Member

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Hi Smartie,

Thanks for your reply. I'm on 30mg of oxycodine and oxynorm for breakthrough pain as oramorph gave me horrible headaches. I also take pregablin for nerve pain, that's why I'm so concerned that this pain is continuing. I'm now on tender hooks waiting for the results on the 6th march.

I went to the doctors today regarding sleeping and my general mood. He's proscribed 20mg fluoxetine which us an anti depressant. He's going to monitor me and I'm going to see him next week.

There are lots of positive stories of ladies living with bones mets for many years. I'm sure they be on to give you some confidence. Your mum is relatively young and I hope she has many happy years with you and your family. I'm sure she'll be a very proud mum to see you get married and have your babies.

Love
Chris xxx

2catlady
Member

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Hi,staying hopeful,so sorry to hear about your mum. But as Tink said there are lots of women on here with mets for many years and going strong . It will feel like the bottom of your world has fallen out for you both,but it does get easier.
As Tink,said read the celebrations posts it really helps.
Huge hugs to you both,Helen xxxxx