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Bone mets - please join in

rosie53
Member

Re: Bone mets - please join in

Morning ladies, Jam I hope you managed to get some sleep love, it's bad enough trying to get some sleep at the best of times whilst in hospital without keep being disturbed for treatment.

Funnyface, bet your so looking forward to the wedding and I'm sure when the time comes you will be feeling fine with everything sorted.

Well spent most of yesterday looking for a holiday for September, it started off exciting then by early evening I was losing the will, the prices have shot up for the canaries  (after the Tunisia thing) a friend mentioned Crete to us but neither of us have been there so we are dubious about it,.

Hugs to all Janette xxxxxxx 

Jam
Member

Re: Bone mets - please join in

Thanks ladies feeling fed up at mo. Why do they have to give your treatment in the middle of the night so you're disturbed and you disturb everyone else. Got my zometa which took all day to set up. Then more fluids but guess what it has been set up at midnight. I know I should be grateful but just at this moment I'm not. Rant over thanks to everyone. Fingers crossed for you FF xJanetx
funnyface
Community Champion

Re: Bone mets - please join in

Welcome back from vacation, Marie. Jam hoping you get home over the weekend. Girls the wedding is Aug 29th. Four weeks! I can't believe it's that's close. Glo, my son had his meniscus repaired too. I know the recuperation is pretty quick. I'm just hoping I can  get it squeezed in before the wedding. I'm sure they are going to want an EKG and probably won't like the condition of my lungs. I just want to get fixed. FF

Marirose
Member

Re: Bone mets - please join in

It's ok now Lucy I'm just pleased to be back I am not very good with computers and I know I was to blame through my ignorance alls well that ends well Thankyou x

Marie123
Member

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Dear lovely ladies, I have returned from my holidays to the very sad news . My wonderful, funny sometimes naughty , but always kind friend Helen. I have no idea how she supported all of us when she must have been in pain and very poorly. I truly believe she is now in a wonderful place. Take care everyone Marie xxx
Jam
Member

Re: Bone mets - please join in

Just quick text still in hospital calcium is up and down. But at least I'm having zometa this afternoon. Then more fluids. Just wish I knew what's causing it. FF hope your leg's improving xx

LemonDrizzle
Member

Re: Bone mets - please join in

Good morning everyone. Managed to get on here ok so hoping I've done it right.
Jam, hope the calcium gets sorted so treatment can go ahead and then they'll let you go back home.
FF, your leg sounds so painful. Hoping meds make the wedding day less painful.
Have as good a day as you all can - love to everyone
LD x
Lucy_BCC
Member

Re: Bone mets - please join in

Hi Marirose

I am sorry that you experienced some problems getting back onto the forums we are working hard to get everything sorted so thank you for you patience

 

Best wishes

Lucy BCC

Marirose
Member

Re: Bone mets - please join in

Hi everyone so nice to be back on the site had so much trouble I was ready to throw this computer out of the window I couldn't bare to be without my Cyber Friends.

 

Orse I was so pleased to read your news I wish my skin mets would reduce I seem to have aquired more tiny ones. I've been on Denosumab 2yrs now don't think I have had any se's but last year I did get sciatica didn't think any more about it until a couple of month ago I was reading the se and that was one of them but not sure if it was denosumab.Anyway may your good news continue x

 

FF so sorry to hear about your knee it sounds nasty I do hope they can give you some relief for the wedding maybe a simple walking stick could be more use to you I use one for my MS and it gives me stability I hope it goes well for you x

 

Jam sorry to hear you have been in hospital over your calcium levels I do hope it gets sorted out for youx

 

Well love to everyone I'm sooo glad to be back xxx

 

 

Glo
Member

Re: Bone mets - please join in

Hi funnyface,
I have had two meniscus repair ops in the past.
It's done as day surgery, very quick! You come out swathed in a huge bandage and when you remove it there are 3/4 tiny cuts with 1/2 stiches in each!. I had virtually no pain after the first day and was up walking with no problems after 2-3 days.also tore my ACK but haven't had a reconstruction on that and still ski!
When is the wedding?
Good luck with it all
Glo xxx

Chocolates
Member

Re: Bone mets - please join in

FF - I think that sounds a good plan for the wedding.  It's really important to fit this awful disease around what you want.  I really hope your leg improves quickly so you can manage on the big day.  How long to go now?

 

jam - so sorry to hear you are back in hospital.  Fingers crossed the calcium levels have come down so you can have treatment today.

 

busy day today - one of our kittens is unwell so off to the vets with that one and then off to the hairdressers later to try and make sense of this mop on my head.  Bless them they always try but I have such a frizz at the front that whatever you do it looks pretty awful.  I must confess I'm not the best kept person and don't really bother to much with appearance so it's not too bad - and of course I do have some hair so for that I'm grateful.  After losing it twice to chemo I'm just relieved it grew back again.

 

have a good day ladies, thinking of you all xxxx

funnyface
Community Champion

Re: Bone mets - please join in

Just seeing if I can post now. After I signed up again I couldn't post. Seems to be working now!

funnyface
Community Champion

Re: Bone mets - please join in

Bel, Me too! I tried crutches and just going across the living room one time with them made my other knee hurt. The next day the inside of my upper arm was all bruised too. I decided it's easier to limp and have one leg hurt. My son asked me what pain killers I'm taking. I told him they're called grin and bear it. I have to be desperate to take them. I started the femara so far so good. I start the new drug ibrance on Monday. I wanted to start one at a time. I also will be off the ibrance the week of the wedding. You take it 3 weeks on 1 week off. Oncologist wanted me to start it last week and I said no that it could wait 1 week so I would be off of it for the wedding. My breathing has improved since I came off the gemcitabine. I haven't had to use the O2 . I think if I went somewhere and walked fast I would need it. I won't be doing that with my knee. I'm hoping to get it repaired before the wedding. It probably will depend on what tests they decide I need before surgery. Lol walking on thus painful leg has to be more stressful than a short surgery repair. FF

belinda
Member

Re: Bone mets - please join in

FF I'm so sorry to hear about your knee. I hope this is something resolved quickly.

And I hope you are soon home Jam.

Had real problems re registering on the site so if I disappear you will know why. X

funnyface
Community Champion

Re: Bone mets - please join in

Jam, Hope you get out quickly! FF

Jam
Member

Re: Bone mets - please join in

Back in hospital again calcium gone back up. It's going to be a long night 😞 but hopefully this will sort it out and I'll be able to have zometa tomorrow. Hope it's just a blip and the letrozole and zometa are still working. xx

Kenni
Member

Re: Bone mets - please join in

Omg I just read about Helen. Even though I don't post here much but Helen usually PM to support me through the last 18 months. Condolences to her family and friends. We all here will missed her very much. She was such an inspirational to me with her fight of this disease. She always encouraged me to see the bright side of things even though I am in the downward spiral. Rest in peace now and hope you are in a better place. RIP Helen. Kenni x

funnyface
Community Champion

Re: Bone mets - please join in

Tore the meniscus in my knee. MRI tomorrow to make sure I don't have any cancerous lesions and to check the ACL too. Monday see the surgeon to set up surgery. It hurts mire in the back of my leg  than the knee. Trying to get scheduled and healed before my daughter's wedding. FF

Mermaid007
Member

Re: Bone mets - please join in

So very sad to hear about Helen. She was always one of the first to welcome people to this site with words of friendship and encouragement. A bright star in the sky tonight. Thinking of her family and sending strength. X

Tinkerbelle
Member

Re: Bone mets - please join in

Have just come on and read the devastating news about Helen (thank you Chocolates that must have been so hard) - she really was one in a million and helped so many ladies (me included)  She was so kind, funny and supportive even when she was having a difficult time herself.  It has been a privilage to be part of her cyberworld.

 

She will be so greatly missed - my thoughts and prayers with her family.

 

Rest peacefully Helen x

 

geordiex
Member

Re: Bone mets - please join in

I have mine in my leg had a rash for a while but used hydromol cream and it went they wanted to change me onto an iv one but I said can we not just wait and see if I get used to it and I did xxx

Barton
Member

Re: Bone mets - please join in

Joining everyone here to say how sad I am that Helen has passed on (hopefully to somewhere better, without pain and worry). Devastating news. She was so helpful and funny, and cheerful, even when she herself was going through hard times. She helped me a great deal, too, when I was first diagnosed with mets. All my best wishes to her family, and to you, too, Chocolates, as you were obviously so close to her. She will indeed be very much missed. Huge Hugs, Barton.x RIP Helen.

rosie53
Member

Re: Bone mets - please join in

Orse, that's great news!!! I have denosumab injections, can't say I have any side effects, I use to have it in my arm but started to get a lot of pain in that arm which led to something called a rotator cuff injury it was so painful and I had to have a cortisone injection which has done the trick and it's fine now but I always have my denosumab in my stomach now.

Hugs to all Janette xxxxxxx 

Chocolates
Member

Re: Bone mets - please join in

Orse, that is good news, thank you so much for sharing.  Mets shrinking is really good - fingers crossed it continues.  I'm on denusomab, it's an injection given in the arm or tummy.  I have mine in my tummy and to be honest not many se's, slight bone ache two to three days after but nothing to worry about.  Some people who have it in the arm complain about it hurting and pain after for a few days so if you get an option opt for the tummy.

 

good luck to anyone else receiving treatment/scans/ results this week.  

Hxx

 

 

helen44
Member

Re: Bone mets - please join in

Oh Helen you will be sadly missed by all-family, friends and cyber friends. May you rest in peace, free from pain and this horrible disease. I will raise a glass tonight to you and my sincere condolences go to all who loved you. Love Helen xx
Orse1970
Member

Re: Bone mets - please join in

Ladies

Tiny bit of good news... Saw my oncologist today, after three lots of carbo/gem my mets have shrunk.. Can even see the reduction in the skin mets - thickness in skin shows the mets on a ct.. There is a shadow on my lung 😞 but has been reported as a infection, onc says that's a wait and seen area.. I also have something showing on my pelvic bone and she is giving me injections of densumab (sp?).. Is anyone on this? Can anyone tell me what the se's are???

I also mentioned that I was concerned about my options in future as Eribulin has been taken off the cdf list and she told me as of last week it is BACK on the list... Good news for all..
Thinking of everyone who is having a bad time at the moment...
C xxxx
Lynnq
Member

Re: Bone mets - please join in

so so sad to hear about Helen.  She was a lovely lady, and as many others have also said she was very supportive to me when I first was diagnosed.

Love and thoughts for her family, and also for you Chocolates...it must have been difficult for you.

 

 

stresshead
Member

Re: Bone mets - please join in

Oh no..the news we were all dreading. I dont know what to say......i can only echo everyone else's thoughts and comments. Helen helped me so much right from the start of my secondary diagnosis. Even though most of us are just names to each other it is like losing a loved one. Helen you were an inspiration to us all. God bless.

Chocs..thank you for keeping us informed....so sorry for your loss.x

Tournesol
Member

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So sorry to hear about Helen. Thinking of her family and friends.

Rest in peace Helen.

Tournesol x
pam01
Member

Re: Bone mets - please join in

I would like to add my tribute to Helen who was a wonderfully supportive member of the forum.....There was long time last year when I came to the forum each morning anticipating Helens first post of the morning saying "good morning ladies!" with real pleasure  and missed it terribly when she managed to get away on her trip to America (although I was clearly delighted she managed to go on her dream holiday and really enjoyed it). I will really miss looking in to read Helens warm posts. Deepest sympathies to Helens closest friends and her familyxx

funnyface
Community Champion

Re: Bone mets - please join in

Oh no! I just read about Helen. I'm so sorry that her effort to try taxol failed. She gave it her all. She seemed to be quite a character. I enjoyed her posts. RIP dear Helen. FF

funnyface
Community Champion

Re: Bone mets - please join in

We got you Rosie, Orse and Still here!

LemonDrizzle
Member

Re: Bone mets - please join in

The news we've all been dreading about such a special lady who always shared her words of wisdom as well as her lovely sense of humour. My thoughts are with her family and I hope they can see how well loved she was here.
Thank Chocs for sharing this awful news - sending a hug your way
LD x
Chocolates
Member

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Ladies I've just started a thread in the dedications and remembering others section if anyone would like to add to it xx
madge1
Member

Re: Bone mets - please join in

I have just seen the very sad news regarding Helen (catlady). She was a true inspiration and helped me so much when I was first diagnosed with my double whammy!! Even though I haven't posted for a long time I always read the posts daily and she lifted everyone's spirits!!
May she rest in peace and sending love and condolences to her family.
Julie xx
Orse1970
Member

Re: Bone mets - please join in

I've just seen the sad news about Helen,,, she helped me a lot when I was first diagnosed with mets.... I am thinking of her and her family...,.. This disease is so cruel... Hugs to everyone who knew and will miss her.. xxx
belinda
Member

Re: Bone mets - please join in

Dear all, there are some of us in the cyber cafe, raising a glass to our dear Helen and lighting a candle, do join us. X
Jam
Member

Re: Bone mets - please join in

Please let the family know what a special person Helen was to us all Chocs. We must keep helping each other in her memory. Let's have lots of smiley faces please as we think about Helen 🌞🌞🌞xJanetx (I hope I don't offend anyone with the smiles but I think there is reason to smile when we remember her) x
JulieD
Community Champion

Re: Bone mets - please join in

Thank you Chocolates for passing on such sad news, I know how hard it is so send you lots of love and a big hug.

Helen will indeed be missed. Her cheerfulness and sense of fun was infectious. My thoughts are with her family and friends.

Rest peacefully Helen. Fly high and free xx

 

nicky08
Community Champion

Re: Bone mets - please join in

Oh no, the news I think we were all dreading to hear, but had hoped that Helen's amazing resilience and fighting spirit would once again pull her through. Helen was such a star on here as everyone has said and will be so sorely missed. As one of the early morning users on here I always looked forward to her happy breakfast time posts and will really miss her and them. The only comforting thought is that she is free of pain now and shining down on us. My thoughts go out to her family and friends. Sleep well lovely 2catlady 😿😿
Nicky xx

Jo_BCC
Member

Re: Bone mets - please join in

Thank you Chocolates for passing on the sad news about Helen.  Would you be so kind as to pass on to her family and friends our sincere condolences from everyone here at BCC.  Helen was a well liked and valued forum user for some time and will, I am sure be missed by many.

 

Our thoughts are with you all tonight.  Take care,

 

Jo, Moderator

edwina64
Member

Re: Bone mets - please join in

So sad to hear the news about Helen....she had a positive impact for all of us on this forum and I can't  quite  believe she has left us so soon. My heart goes out to her family they should be so proud of her. Free from pain and worry now god bless you xxx

vercors
Member

Re: Bone mets - please join in

I don't contribute very often to this thread but I get email alerts and read every single message. 

Today, I need to come and add my voice to the tributes to Helen. Indeed, for the many years I have been on this forum, she has always been a great support at the time of my secondary diagnosis when I was trying to get my head around this horrible disease. 

 

Helen, we will miss you greatly. Fly free, painfree away from this wreched disease. xxx 

S. 

Marirose
Member

Re: Bone mets - please join in

What a shock to read Chocolates post I burst into tears Helen was really loved she was an inspiration to many of us here she was always there with her knowledge to help others it will seem very strange to visit this site without her being here.

 

Helen I am glad you are no longer in pain may you rest in peace and condolences to all her family and friends and thankyou Chocolates for being there for Helen and Forum friends xxx

belinda
Member

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Oh Chocs, I was amazed at how many times Helen pulled herself back from the brink. She had such a love of life, such spirit which shone through all her posts. My sincere condolences to all who loved Helen. Gone much too soon but your light shone brightly Helen. X
rosie53
Member

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Oh nooooo!!! This is the the worst news, I have been praying our truly wonderful Helen would be able to find the strength to get through this latest set back.

I am truly devastated for her and her family, she was an inspiration to us all on the forum always there to lend her support and cheer us up with her cheeky humour, i feel privileged to have been part of her cyber family.

 

Helen god may you rest in peace 😇

Off to join Chocolates sing Let it Go 

Hugs to all on this very sad day

Janette xxxxxxx 

Sarn123
Member

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Hi chocs I am so terribly sad to hear the news of Helen as you mentioned when I came on to forum Helen was the first one to welcome me and answer any questions I asked with her wise words. She will be greatly missed by all on here, my thoughts are with her family and everyone who knew her. Sleep in peace helen🙏🏻😢
Chocolates
Member

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Ladies, it is with an extremely heavy heart that I have to tell you that our beautiful Helen gained her wings this afternoon. Naturally her family are devastated as am I. Helen was always there for us all, when I first arrived on the forum, scared and alone Helen was instantly there. She knew what to say, she knew how to comfort, pick me up and never let me feel that I was alone. Helen was amazing, she was one in a million who loved us all and I know felt our love and support. Her sense of humour was witty and naughty at times, you only have to visit the cyber cafe which she set up to see how she spurred us on to try and live a little of our lives without the big c interfering. We laughed, we cried but ultimately Helen was at the centre, determined that we would never be alone or face any challenges without her holding our hands.
The tables have turned these last few weeks, it's been a privilege to hold Helens hand, to be there when she needed us, to offer those words of support which I know would be an automatic response from her. However, in real terms that support will no longer be there from Helen but I know that she will be with us in spirit.
Ladies, this is still too raw but in time I will come to realise that Helen is now free from pain and suffering and that will be a comfort. In the meantime I'm going to go and play Let it Go loudly and sing along for Helen. I know that that is what she would have wanted.

Fly free Helen, a new star will shine brightly tonight xxxx
Stillhere
Member

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I have just had a CT scan but no Onc appointment for 3 weeks....can I throw my extra large styrofoam out to Helen? Climb on gently, lovely lady xxxxx
helen44
Member

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Just managed to log on forum whilst in France and I am so sorry to hear Helen is poorly again. I do hope and pray that Taxol works for you Helen. Sending big hugs to you & everyone else-I notice we have lots of newbies. Love Helen x x