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.
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!
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.
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
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
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.
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
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
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,
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
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
Val, how are you? Site so quiet.
Hope you are with your loved ones and comfy.
Thinking of you.
Much love, Claire
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
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.
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.
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.
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
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
Hi Val, read an update from Chris. Good to hear you are being well looked after. Hope you get some energy back. Take care.
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
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
Great 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
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
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