Bone mets - please join in

[Porkie]

I am so sorry to learn about Val. Whilst I had never met her she was a lovely lady with so much kindness and thought for others. She helped me enormously when I was first diagnosed - giving me hope for the future - something I will always be grateful for. Heartfelt condolences to Val's family. Rest in peace Val. xxx

Chris - I am sorry you are in pain - like the other ladies have said - I would press for an MRI which will hopefully show the cause and enable treatment to be sorted to help alleviate the pain and put your mind at rest.xx

[2catlady]

Hi,Chris,so sorry to hear about your pain. But as cherry orchard said press for a MRI ,that will show any nerve involvement . It could be shingles too as Cherry o said. Have you seen your GP,if not make an appointment and mention shingles to him/her.
Sending you a very gentle hug,Helen xxxxx

[cherryorchard]

Chris,

I am sorry to read that you are in pain. 

My MIL had shingles without a rash. It is rare for this to happen but apparently not unknown. She had pain and the affected area was very itchy. It may be that you are experiencing something similiar. Just a thought.

Press your oncologist for the MRI. It is really important to scan all of us affected by secondaries to have a clear understanding of what is happening in our bodies. 

I hope you find an answer and relief from your pain very soon. 

[Steris]

Val will be missed by us all and I have felt her passing deeply. She was such a kind considerate lady and I'll never forget. I wish I'd gotten to meet her.

I'm hoping someone will help with my chronic back pain. I know I've posted before but my oncologist at the last appointment said she could see no change in the spine mets but there's obviously something going on. It like nerve pain and the painful to touch. Also the area is very itchy and I'm waking up with the pain which I tender to automatically hold the area leading to more pain. I've had ask the girls in the chemo unit to let my oncologist know. Belinda I'm going to ask hot a MRI scan as I've never had one as I need to know what's going on and feel scared by the prospect of spinal cord damage the longer it's left.
Thanks in advance for your replies at the hard time.
Much love
Chris xxxxx

[livlassie]

What sad news this is.  A lovely lady with so much kindness and thought for others, especially those newly diagnosed who come on here scared and bewildered. Heartfelt condolences to Val's family. Rest in peace Val. xxx

[pollym]

Rest in peace Val.  In the 7 years I've been on this site I have seen what a wonderful support she has always been.  She will be tremendously missed and always remembered. Xxx

[pam01]

I am so sorry to hear this news about Val...My heartfelt condolences to her family........but perhaps on this site we can also celebrate the fact that Val overcame BC for many years and lived to see her family grow up. She has been a tremendous helpand support for so many and her memory will remain with those who post here for many years.RIP Val.

[cherryorchard]

I am so sad to read this news. She was a stalwart of this forum and had shared her experience and wisdom with many.

My heartfelt condolences to her family.

[nicky08]

Our dear Val (Scottishlass) who helped so many of us with her support over the years and  welcomed anyone newly diagnosed with secondaries, especially bone mets.  She was one of our 'buddies of May' and will be sorely missed by all of us.

My heart goes out to her family and friends at this difficult time.

Thank you Carole (peacock) for letting this thread know as many have been asking of her recently.

Nicky xx

[roxy12]

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

[Smartie]

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

[vercors]

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]

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]

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

[pumpkinsue]

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]

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

[Tinkerbelle]

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]

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]

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]

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]

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]

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]

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]

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

[livlassie]

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]

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]

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]

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]

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]

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]

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]

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]

Val, how are you?  Site so quiet.

Hope you are with your loved ones and comfy.

Thinking of you.

Much love, Claire

[helen44]

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]

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]

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]

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]

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]

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

[dawnhc]

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]

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

[Porkie]

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]

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]

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]

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

[scottishlass]

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]

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

[JulieD]

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

[Buffy3]

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