Bone mets - please join in

[Anne30]

It was near Woolacombe. So peaceful and beautiful. Devon is so lovely x

[Jobey68]

This thread is very important for ladies going through a really frightening time and I for one do not like to see it being treated as a battle ground. If there are any issues that people would like to raise then it would be far more respectful to do it In private and not across the open forum. Jo 

[Becca_BCC]

Morning everyone, 

It's been lovely to see this thread develop since it was first created in 2010 and I hope everyone here living with bone mets has found it a helpful and supportive place to be. 

There will always be disagreements in any community and as moderators we will always try to resolve these as sensitively as possible, only preventing further comments on a thread as a very last resort. 

Please do continue to enable others to benefit from this thread by maintaining its existance as a courteous and kind space that others can take comfort from by allowing each other to move beyond differences and disagreements wherever possible.

For more information about our community guidelines and the ways you can help keep the Forum a helpful and supportive space, please do feel free to email us via moderator@breastcancercare.org.uk. 

Take care, 

Becca at Breast Cancer Care.

[Kate21]

In response to a recent post regarding choice and outcomes, I’d like to add that I don’t feel it is acceptable for anyone, including Community Champions, to send private messages about basically how they believe you should behave on the forum, and what they think you should and should not post. If they don’t feel their comment can be posted publicly, then maybe they should consider if is it reasonable to be sent privately. What gives some the right to go around basically trying to ‘police’ what is posted? 

Definition of the word Forum from an Oxford English Dictionary is: a meeting or medium where ideas and views on a particular issue can be exchanged. Another is, a website or web page where users can post comments about a particular issue or topic and reply to other users’ postings.

[bonariensis]

Where was that? Glad you are having a good holiday. We are in Orkney, it's quite breathtaking. Always glad to get home to Devon though.
Bon xxx

[Anne30]

Yes nature is such a joy. We sat on the cliff and watched the seals today. It was wonderful.

[silverlining]

Hi Anne,

Nature in my lil' garden plays a big part in my life. This year there has been a bumper 'crop' of bumble bees (my fav.) & butterflies, lots of different white ones, orange & brown & some gorgeous tiny light blue ones.....bliss....x

[Anne30]

I seem to make a mess of posting and start a new thread rather than adding to this one! I am sending good thoughts from sunny Devon and hoping everyone is coping with their treatments. I don’t do any gardening and like to read your posts about yours x

[Moijan]

Hi Rosie/Jannette

no offence at all,, on the contrary...I was pleased to see you shared your views, which I did feel were absolutely valid. I am of the opinion that  none of us, should be trying to influence others around to  our own viewpoint.      I too found the situation really hard as my drugs have not worked for a year now - and so the stats chat, even though they can’t be accurate - it hit me very hard. It Can be hard to stay positive at the 5 year mark!

I Personally feel it’s important that we do make our own choices...after all, whatever we do will have an outcome...good or other, Which we will have to live with... so it has to be our own choice.  would hate people to feel that a cc, or an ex professional(of which, sadly there are many on the forum) had expert knowledge  - we don’t - bc is a big minefield. And this forum is just here for support.

Nice to see you posting - moijanxx

[silverlining]

hello JWD,

Gr8 to see u on t'other side. Drains are the pits!!

Wishing you oodles of get well wishes & the speediest of recoveries...

Hugs,

silver...xxx

Hello funnyface,

How goes it in P'vania?? A big hello from me...xx

[JWD]

Thank you FF. Take care.xx

[funnyface]

JWD, Glad the op went well.Now for a speedy recovery! FF

[funnyface]

Rosie/Janette, Happy to see you posting. I'm pleased but very cautious. I really don't believe or can't allow myself to believe it's dead! I haven't told anyone but you girls and my family.Time will tell. Thanks for the well wishes. FF

[JWD]

Hi silver. Thank you I've had the op this morning I was first on the list I'm a bit sore but it's doable. I'm stopping in overnight apparently I was incorrectly told at pre-op that I would be out on the same day. I've got 2 drains my breast nurse will see me in the morning..Take care.thanks again.xx

[rosie53]

Hi ladies, I’ve not been on the forum for a good few weeks but I have to say I have truly missed my regular catch ups and info we all give to each other.
I was maybe a little “touchy” in my last post and I apologise if I offended anyone!!
Just want to say to Carolyn I am really sorry to hear that your last scan results weren’t too good, you take care my “cyber friend” and always know that we are all holding your hand.
FF, absolutely fantastic news for you, I bet you’re on cloud 9!!
Hugs to all Janette xx

[silverlining]

oh....with me & gardens...the bigger the better but they are hard work, but always, always worth it. My forever garden is very small...a tiny patch in the front and a small area in the back where I have my beloved African hut!! Its sheer delight...

I know so lil' about all these drugs..is 'P' a tablet?

Owing to my tooth, I'll be coming off Denosumab for 8 weeks/more.....methinks this is a tad scary!!

xx

[feelthefear]

Thanks for that Silver. 😀

Great that your forever garden is bouncing back. 👍

I’m off to the chemo ward to pick up the first batch of my new drug palbociclib. Can’t wait to get started.

Maybe I’ll do a bit of weeding when I get back. I absolutely love my garden. It’s enormous so can be a bit overwhelming but it’s a great place to forget your troubles. X

[silverlining]

hello f-the-fear,

Just popping in to say a lil' hello...I'm really enjoying this rain and my garden is loving it and perking up....have a good Monday....x

[silverlining]

dear JWD,

Very many good wishes to u, today..xx

[Bridie_BCC]

Hi, 

It's lovely to read the kind messages to Carolyn in this thread. Sending you our best wishes too Carolyn.

A few earlier posts in the thread went against our Forum guidelines.These guidelines aim to keep the Breast Cancer Care forum a friendly, welcoming, supportive space for people affected by breast cancer.

A reminder you can read our Forum guidelines here.

Thanks,

Bridie

Breast Cancer Care 

[JWD]

I know we are in and out before you know it..
we haven't had rain yet but the wind has picked up and rain is forecast today but it is a little cooler thank God! Take care silver.xx

[silverlining]

@ JWD,

It always amazes me how readily 'they' whisk us out of hosp. these days....

Thank goodness for the rain!

Bestest of luck to u....xx

[JWD]

Thank you Silver. They said it could be the same day if I'm done early enough so fingers crossed but will wait and see.xx

[silverlining]

hi JWD,

I'm delighted to read your news.....& I'm wishing you all the very best for your op. on Monday. How long will u be in hosp.? Hugs.....

oh....& please call me silver....xx

[JWD]

Hello Silverlining
Breast nurse rang yesterday to say bone scan was clear so op will go ahead on Monday 30th July. I'm so relieved. I'll definitely have radiotherapy because I didn't have that first time round but unsure about chemo. I'll cross that bridge if and when I have too.thank you hope your doing ok.xx

[silverlining]

Hi JWD,

Any news on your front??

x

[Stillhere]

Dearest Carolyn, I can't say any more than Nicky's words, thank you to the funniest, most upbeat and caring person on the forum, you and your family will be in my thoughts and prayers xxxx

[nicky08]

Dear Carolyn, what a shock to read your latest post, my heart goes out to you. I had thought you had been a bit quiet on the forum over the past few weeks but put it down to being busy elsewhere, in the real world. As the other ladies have said you have been such a wonderful friend on here to so many of us, we will miss your ‘as useful as a chocolate teapot’ expression. You have always brought a cheery start to the day (we log on and read at a similar time) which we will all miss. If you feel it is right please do come back on here, even if it’s only to read the messages of support. You will know that we, your friends, are holding you close. Now make sure you get on and spend that time with your family as they are the most important people for you.

Nicky 💖😘

[silverlining]

Hi Maria,

I put my thinking cap on.....I've inflammatory arthritis so I'm also under a Consultant rheumatologist. There are 2 ways to attack pain of this sort....anti-inflammatories like Etiricoxib/ neuropathic drugs like Gabapentin...We should not have to suffer pain. I'm in flare at the mo' so u have my heartfelt sympathy....please seek professional advice...& take care..x

[bonariensis]

Hi Maria12

I'm sorry you are in so much pain. Having had severe back pain quite unconnected with cancer, I know how awful it can be. The fact that you recently had a bone scan and a ct scan should be reassuring, I have never had a lot of pain from the mets in my pelvis but I did have acute pain a while back because of too much strenuous gardening. I got some painkillers from my GP - that might be a good thing to do - and had arranged to see the onc but it began to improve before I got there so I never went. There's no harm in getting some painkillers and speaking to your bcn. She should be able to advise you what's best to do. It's lucky you have an onc appointment soon so will be able to talk to him/her.

Hope the pain eases.

Bon xx

[tatyana]

Carolyn, you have been so supportive and given so much, all I can say is thank you. Sending love and hugs to you and your loved ones. Perhaps it will help them, and you, to know that you have really made a difference to this little community. Go in peace.xx

[bonariensis]

I have been lucky enough to meet Carolyn once or twice and she's just the same face to face as she is in her posts. I am sad that i won't be reading them any more.

We will all miss you and your support and will carry on holding you in our hearts and remembering how you brightened up our days. 

Bon xxx

[Hayeswen]

Carolyn

You have been so supportive and kept us all from falling over I am genuinely upset at reading your news. I can only offer best wishes to you Wendy xx

[funnyface]

Zana, NED is no evidence of disease. 

[Sarahlew]

So very sorry to hear this carolyn - I do not know you but as others have said your humorous posts have put a smile on my face. I hope you take comfort from the love and support of those close to you .
Sarah x

[JWD]

Didn't know you Carolyn but sad to hear your news. I wish you and your loved ones well. Take care❤

[Zana]

Sorry what’s the NED? I’m just learning all the abbreviations 😀

[kirky_68]

Oh Carolyn, my heart goes out to you. Wishing you all the best - it doesn't matter how long we get - we always need more time.

I hope the dreaded C is gentle with you.

All my love to you and your family

Paula xx

[redridinghood]

Carolyn.........we’ll miss you. But we are all still holding hands so maybe you will be dropping by to keep an eye on everyone!

Always thinking of you, Carolyn. You’ve given me a lot of laughs! But now it’s time to concentrate on Carolyn for a while. 

mo.      xxxxxxxxx

[Mermaid007]

Thank you Nicky that was very useful info. I haven’t had anastrozole so will mention it. Love xxx

[funnyface]

Carolyn, We are here if you need us! Thanks for always finding a way to make us laugh! You always put a smile on my face! Your advice and humor will be missed. FF

[Kate21]

I am very sorry to read your post Carolyn. I know you have been supportive to, and appreciated by, many ladies on here and believe from reading your posts that you will have that support from your family and friends. I wish you, and your loved ones, well. Kate x

[Anne30]

I am so very sorry to hear this. I wish you strength as you del with this. You have offered advice and support to others. Thank you. Brace to share your news and I hope you receive good support

[Kate21]

I can give you his answer to that one now...his opinion will definitely be no, but to check with your Oncologist. I think because the Onc is sort of in overall charge of us they kind of have to say that! That said my Onc says what did Max Fax say!!

..just to add, I will ask again even though in the past has said longer x

[silverlining]

Hi Kate,

Actually I do have one question. Is 8 weeks off Denosumab either side of extraction sufficient? Many thx for your kindness....

silver...xx

[Kate21]

Hi Silver, my dentist wouldn’t do the work on mine so I was referred to the dental surgeons, I was referring to when I had the first signs of infection when I said my dentist was useless, the dental surgeon was excellent. I have my Max Fax check up next week, and if it’s still the same surgeon he is lovely so if there’s anything you’d like me to ask him let me know and I will run it past him...he can only say no! Kate x

[Maria12]

Silverlining thank you for your reply x

[silverlining]

hi maria,

When I was Dxed I had mets in L&R pelvis but I was asymptomatic.....guess that's not really helpful.....x

[Maria12]

Hi hope no one minds me jumping on post ,am looking for advice and scared tbh ..i was dx with tn in jan 17 had ec and pacs mx node clerance 7/12 ,rads ,to 3 places and 8 rounds of capcitabine which ended in march ..had clear ct and bone scan 5 weeks ago .i was wondering if any ladies have mets to there back or hips and if so how did you know .ive had slight back pain for few days, on monday night i turned over and felt like back had gone all fine tuesday morning then in afternoon i got this awful pain across my back hips and pelvis .i have quite high pain tolerance but this has floored me and had me in tears..today its a dull ache but mainly in hips area ..sorry for long post but does this sound bone met familiar any advice appriciated .would it be best to see gp or contact bcn im seeing onc in 2 weeks time .would this fall under the wait 2 weeks regime of wait snd see .thank you ladies