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Bone mets - please join in

liamanna
Member

Re: Bone mets - please join in

Good Morning ladies another sleepless night for me again! I'm still not in bed yet because my mind is doing a wee bit of overtime lol! I hope you all slept well last night and I hope you all have a great Saturday & as painfree as possible! Enjoy your weekend ladies whatever your doing! Sending you all big hugs xxxx                         Maxine

liamanna
Member

Re: Bone mets - please join in

Happy Birthday for Monday Helen & Have a great time away and don't forget your mickey umbrella lol. Yeh I can identify with the Christmas blues I think quite a lot of people do a fair bit of crying over & after the festive season! I hope you have a brilliant time Helen & really enjoy it! Sending Hugs to you xxx Maxine

belinda
Member

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Have a wonderful time Helen, Happy Birthday. X
Can identify with the Christmas Blues ladies, had, still have, some new back pain. Onc visit next week, so timely. 😞
Never mind the days are now going to be getting lighter, longer! 🙂
2catlady
Member

Re: Bone mets - please join in

Hi,Lynn, yes,Christmas is very emotional ,I've had a few cries over the Christmas xxx so hugs coming your way xxxx
We go on Sunday ,it's my birthday on Monday and come back Wednesday. I just wanted to see the disney decorations which will still be up and all the rigmarole .
Hugs,Helen xxxx
Lynnq
Member

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Hello everyone. Mowser so pleased that you are feeling better.....what a wonderful holiday to look forward to. On reading your post I asked my husband if he fancied going to Mauritius, after my good scan result before Christmas we are planning a trip to the USA in March.....probably touring the Southern States. Sooo pleased that your heating is back on as well.
Christmas and NY were pretty good for me. Got really emotional on Boxing Day...youngest son and his partner came Christmas Eve and were staying until day after Boxing Day but he had a dreadful cold so they decided to go home Boxing Day evening.....i went off to the 'toilet' and had a little weep. How silly, our eldest son his wife - our daughter and her husband and our four granddaughters were all there....so it's not as if we were lonely! Never used to be so emotional.
CW17 that's good reassurance for you....isn't it wonderful how someone on here usually manages to help and reassure
Helen when are you away to Paris.. Enjoy
Love to everyone else!!?,
LemonDrizzle
Member

Re: Bone mets - please join in

Good afternoon everyone
Mowser, fab to see you are feeling so much better today. Your holiday and car are both very exciting - have you seen a car you like yet? My humour too has become very black and most of my family/friends can't cope with it!
Jenny, ten years (and many more obviously) is so inspiring for us all. Keep giving us hope and confidence about the future.
CW, the word palliative is horrible when you see it written down. It was on my discharge letter from hospital after my first horrendous chemo back in early April and it knocked me for six. Even though I'd been so ill and stuck in hospital, that word was harder than anything else I had to cope with.
Hope everyone's having a good day and getting over the mad few weeks.
LD x
Mowser
Member

Re: Bone mets - please join in

Double reassurance-even better!!!  🙂

 

pam01
Member

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sorry cross posted with Mowser!!

pam01
Member

Re: Bone mets - please join in

Cw11.you will be pleased to know on this occasion you are completely wrong!! A performance status of zero implies no limitations on activity and fully functioning! Sometimes you have to be fairly fit to undergo trials etc...ie a performance status of 0 or 1. ...zero being the best and 5 being the worst.....

Mowser pleased to hear you got insurance with MIA....its my favorite company to try but unfortunately my next panned hols are a cruise in feb...which MIA wont cover so have used eurotunnel.....will be interested to hear about your car!!

Mowser
Member

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So Cw17, it couldnt be any better!!! 

 

So please stop worrying now, and you go and enjoy the rest of your day you lovely lady!!!

 

Mowser xxx

Mowser
Member

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Cw17, have no fear you have a researcher here!!!

 

It is a scale used to detemine your current state of health given your cancer diagnosis. It is scaled in intervals of 10's running from 0-10.  

 

Your 0 reading is fantastic!!  This is what it means......

 

 

Asymptomatic (Fully active, able to carry on all predisease activities without restriction)

 

2catlady
Member

Re: Bone mets - please join in

Oh Mowser,fantastic you go girl xxx wow you are on a roll,holiday and new cars yippeeee!
Massive hugs,Helen xxxxx
2catlady
Member

Re: Bone mets - please join in

Hi,Cw,we all know what you mean ,it's very hard to put a brave face on and emotionally draining at times.i find it hard when people say oh your so brave and look so well and I want to burst out crying .i do at times! I know they mean well but I don't think anyone not in our situation can know how it feels.
I remember seeing palliative care on my rads form and it really upset me too. They have to put that as it's not curable,but I do with they wouldn't . I don't know what the performance status means as I've not seen that,sorry
We are all here for you sending you massive hugs,Helen xxxxxxxx
stresshead
Member

Re: Bone mets - please join in

Hello to all you lovely ladies. Just wanted to echo all the New Tear comments that have been posted. As i was expecting i found it all very emotional..just so hard to keep putting a brave face on everything. Its so comforting to know you are all out there knowing exactly what it feels like.

I wonder if any of you can help me.. I went to hospital on Xmas eve to get next cycle of cape and saw the oncology Dr instead of my Onc. I got a copy of the GP letter on New Years Eve (why i opened it on that day i have no idea!!)...it was headed 'palliative chemotherapy'..which really depressed me...somehow seeing it in writing makes the seriousness of it all so much more real. It also said 'Performance Status:0' and i have no idea what this means but as usual think the worst. has anyone got ny ideas?

Sending very best wishes to al. xx

Mowser
Member

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 Way to go Jenny!!

 

Its women like you that give so many of us on here so much hope and inspiration.  You keep it up!!!

 

Have hit the ground running today, this the second day of the New Year...

 

My heating and hot water have been fixed!!! Having a hot bath after I finish this email!!

 

Have started looking at Motability cars (soo excited-mine is an absolute tin pot worth nothing, and falling to pieces). Have got confirmation of  travel/medical insurance for our planned holiday end an to Mauritius-our first holiday for 18 months! Thanks to all who gave recommendations-we have had a quote of £352 from MIA for two of us for 10 days which I think is quite reasonable actually given our respective chronic conditions!! (He, heart, me sbc!) I was explaining the fact they repatriate back to the UK if we get sick over there to my partner, and he said 'Knowing my luck, I will probably die over there, and me, the half full kind of girl, said 'Yes but they will still bring you back, just in a box!!' Our humour is positively gallows these days!

 

We have found the Hotel we want to stay in!! Booking today. Have made appointment for doctors to get relevant jabs/malaria shizzle and letters confirming fit to travel etc. Even called the Mauritian High Commission to confirm it is acceptable to take Oromorph with me (recommended to do by insurance company).

 

So am on a roll today, and despite my liver pain, feeling excited!!! 

 

Hope all you lovely ladies are having a good day, are not in too much discomfort, and are enjoying every moment. This is one hell of a roller coaster ride (I was soooo down yesterday), but I am making the most of this upturn in my mood, and am all the better for having you guys to share it with.

 

Its a beautiful day out there, sun is shining. I have put my daughters xmas present of a bird bath in the apple tree, and it looks lovely. 

 

Huge hugs to all of you.

 

Mowser xxxxx

 

 

jenny29
Member

Re: Bone mets - please join in

Happy new year and echoing the wish for it to be a kind one.

 

Spent the celebrations quietly, which was fine. It was wet here. Toasted another benchmark.

 

Hard to believe I've reached 2015 since getting my first diagnosis. I've just realised it's 10 years. Found a lump the xmas of 2004.

 

Thank you all so much for the support on here, it's been invaluable.

 

Porkie
Member

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Happy New Year to you all. I hope that 2015 is kind to us all. Jackie xx

Chocolates
Member

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Happy new year everyone. Got my family around me today and I'm cooking a nice roast for everyone. It's a good way of taking my mind off everything. Going to pop into the other room later and sit in the armchair with a glass of baileys with dc.

So we come to another year ahead of us. Fingers crossed it is much easier for us all and we respond well to treatments which keep us stable.

Much love,
Hxxx
rosie53
Member

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Happy new year to all my special friends. Hope its a good one and god is looking down n us all looking after us!!!
Its very wet here in Bowness so have no other option than to sit here in a bar hugging the log fire with nice glass of red...or two 🙂
hugs to all Janette x x x
LemonDrizzle
Member

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Mavis and Sheila, you have both had an awful time. Really hope things are easier this year.
LD x
Mowser
Member

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Good job Mavis-way to go!!

 

You get Stoic award of 2014!!!  So so pleased you are feeling better, long may it continue 

 

Hugs always, Mowser  xxx

 

bill-ben
Member

Re: Bone mets - please join in

What have I done? My Happy  new  year has got mixed up with fintys post don't know what I have done.Computers and me are not good friends  arghhhh .  

bill-ben
Member

Re: Bone mets - please join in

Happy New Year Everyone 


@finty wrote:

I was dx with a bone met at original dx in Oct 09. Recently I have been shamelessly picking the brains of other ladies with bone mets wherever I find them, and have found the process very helpful and often encouraging. It has enabled me to be less panicked about my prognosis, and given me a much better understanding of my condition. I now have a whole new set of questions to ask at my next consult - bet my onc can't wait!

I know I would find it very useful to have a designated thread where experiences can be shared, and advice sought - so if you agree and also have bone mets perhaps you could check in here and we could get the process started. I know it's a bit quiet at the moment, with many away on holiday - but here goes .....

finty x


 

roxy12
Member

Re: Bone mets - please join in

Hi Mavis,

So glad things are so much better for you now. You have certainly been through it these past few months. I have been through a bad patch also where they didn't think there was anything more they could do but it just shows that you have to stay positive and you will come back fighting!

We all feel so low sometimes but like you I am in a much better place now. Hope you continue to improve daily.

Lots of love and good wishes for 2015. Xxx

Tinkerbelle
Member

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Happy New Year to everyone - seconding all the sentiments expressed on the thread x

pam01
Member

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Happy new year ladies.........quiet night after a meal out....now enjoying the New Years day concert from Vienna....(on the TV!)...Good luck to us all for 2015!

Stillhere
Member

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To all the brave and selfless ladies on this forum have a peaceful, pain-free and side-effect-free 2015. I don't post often but I want you to know how much your positive,fighting and funny posts have meant. I have made New Year just a normal day, couldn't face celebrating so was in bed by 10pm, up and going for a ride on my horse by 9.30am!!!
LemonDrizzle
Member

Re: Bone mets - please join in

Good morning everyone
Hope you all managed to get through last night without too many problems. I found it much harder than Christmas and my brave face well and truly disappeared as midnight approached. Picked myself up after a few hours, because we have to don't we, and managed to get a couple of hours sleep so feeling a bit better this morning. Dug out full waterproofs and off for a short walk by the river in the rain and then home for a bacon sandwich, so should be back on an even keel after that!
Hope everyone else is ok and germs and SEs not making you too miserable.
LD x
JulieD
Community Champion

Re: Bone mets - please join in

Happy New Year to all my bone friends ans everyone else who uses this thread.

 

I hope 2015 will bring us stability, effective treatments and strength to cope, alongside love, laughter and support.

 

Lots of love to you all xxxx

2catlady
Member

Re: Bone mets - please join in

Good morning lovely ladies and Happy New Year.
I slept through it I'm afraid .well until fire works woke me up at 12:00 and my angry eyes were flashing. I blame the millennium nobody did fire works until then grrrrr.lol
Hope everyone had a great time if you were partying or not like grumpy pants me lol
Huge New year hugs to everyone,Helen xxxxxxxxx
Jam
Member

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Happy New Year everyone x. Janet
Kenni
Member

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Happy new year to all the ladies here

liamanna
Member

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Happy New Year to everyone I wish you all a very peaceful and less painful and sick 2015! Let's party lol       Sending you all big hugs from me to you xxxx                                                                                                           Maxine.     

Tournesol
Member

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Happy New Year from me too - I don't post much but read the posts every day and it helps me to cope.

 

Tournesol x

2catlady
Member

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Happy New Year to all the lovely ladies xxxxxxxxxxx
Wishing every one all the best for 2015 xxxxx
Macie40
Member

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Happy New Year to all and a big thank you for all the support and information you have given me through out this journey. Good luck to every one going on with treatment in 2015 Love Macie x x x

vercors
Member

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I couldn't agree more Lemondrizzle. Wishing you lovely ladies a happy New Year, painfree and full of good news. Xxxx

LemonDrizzle
Member

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Wishing everyone a happy and as healthy a new year as possible. Hope we continue to benefit from the wonderful support and friendship from each other, which I'm sure is a life line for us all.
Love and hugs
LD x💝
madge1
Member

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Wishing everyone a very Happy New Year !!!
I hope that 2015 is a happier and healthier year for all !!!!
Love Julie
Xxx 🎆💝🎉🎉🎉🌅
Lucy_BCC
Member

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From all of us at BCC -thanks for your best wishes and here's to a happy and healthy 2015 to all of you

Take care all

Bevlaar
Member

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Mavis...lovely to read your post. You've been through so much but as always we're all here for each other. Lets all keep each other company again in 2015 and hope for a healthier happier year 💖💖💖
Love and hugs to you all xxxx
belinda
Member

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Hi Mavis, lovely to see you here! Hope everyone has a good year for kind, effective treatments. X
Chocolates
Member

Re: Bone mets - please join in

Well ladies - a healthy as possible new year to you all wherever you may be at the moment. Looking forward to you all holding my hand again this year as we continue our unique journey - this illness is dreadful but I feel privileged to be part of this group - so a double edged sword - without it I wouldn't have 'met' you all.
I won't be up long - lemsip and ab's to take then off to bed. Doesn't excite me now the new year but very happy for others to celebrate and party. I'm pleased for them.

Huge hugs xxx
Hxxxx
2catlady
Member

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Mavis,you are a star. So glad you are a happy bunny again . We have been so worried about your absence .
Huge hugs,Helen xxxxxxx
Chocolates
Member

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Oh Mavis, so happy to see and read your post. You are most welcome to be back here - we've missed you. Fingers crossed that things really begin to settle for you. Happy New Year xxx
sivam
Member

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Hi lovely friends,I am now back"I Think from the Brink",I have had the most dreadful time but now much better Deo Gratias if 3 stone lighter. Everolimus after Taxol again caused Diarrrhea, low sodium, low haemaglobin the lot!! then MRI found cancer  cells in the space above the brain, so Everolimus replaced by Capecitabine, very mixed results from Cape, some diarrhea but worst I got the side effects "Foot Syndrome"lots of skin peeling and an ulcer on the heel, which has meant that chemo was stopped for 4 weeks, but slowly everything is healing and today I received my next months supply of Capecitabine and good results from blood tests. So now Storming Heaven for freedom from the "trots" and "rotting feet" It is quite a relief to talk with you all,using the desktop lately has been a step too far,My spirits are now on the up having sunk so low.One happy old Bunny!! Love and Light xxMavis

Happy New Year xx

Lynnq
Member

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Hello everyone, here to wish everyone a Happy New Year. OH and I are just having a quiet day today after a very busy, but enjoyable, Christmas....
Helen Have a good time in Paris - we went year before last when we had to cancel Florida...loved it....do hope your Ears etc. get all better before you go....are u flying

Maxine welcome..I have bone mets and have not had chemo only hormone therapy, like you ONC said saving chemo for -"the future should it become necessary"- I have been stable for 2 years on LETROZOLE

Wishing everyone else all the best, and as always thanks for all your support.....
roxy12
Member

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Hi chocolates,

Hands up. Am not going away. Just glad to be feeling a bit better! Low HB now though due to chemo. Will have 2 units of blood on Friday and hopefully next chemo next Tuesday. 

 

Hope you have a fabulous New Year Chocolates. All the rest of you too. And those going away have a brill time!! 

 

Love and best wishes, from Sheila. Xxx p.s. Natalie, enjoy that new car! I will be looking out for it on the Christie car park! Xx

Bevlaar
Member

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Morning all...morning helen! You lucky ducky....mickey and minnie are waiting for you! Hope you have a fa time. We took our daughter for her 5th birthday which was in a december...the winter parades are stunning. Enjoyed it so much we went again 2 years later in june!
Welcome Maxine to our lovely cyber family. Hope we can help and support you when needed.

Wishing all my friends here a Happy New Year....as good as it can be...with better health, better test results and continued hope for the future that things will improve for us.
I don't really enjoy the new year celebrations and will just quietly watch the fireworks on tv with family close by..... (but will raise a glass of baileys to us all).
A huge thank you for the support and advice you've given me since joining in the summer.
I'm off to clinic this morning as i have chemo on Sat!
Love and hugz to you all....bev xxxxxx
2catlady
Member

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Good morning lovely ladies,hope we are all well.roll call is a bit sparse !
Oh a lot of us are off on jolly hols,yippeeee!
I'll let you off roll call as you sent a letter lol xxxx
How's everyone's bugs,hope they are all going now and you are all feeling okay.

Jo,was thinking about you yesterday. I hope everything went okay for you and your dad. I bet you got a shock with cold in NE xxxxxx

Anybody heard from Mavis? It's been ages since she's been on here and she was a bit poorly.
Can bcc send her an email please as we are worried about her.
I'll wish everyone on the forum and bcc all the best for the new year ,huge hugs,Helen xxxxxxxx