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Bone mets - please join in

Chocolates
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Re: Bone mets - please join in

Morning all - lovely day here - washing already on. Still struggling with a very slight cold - it's just not fair as it makes us feel quite ill. Just wish it would go away - it's my half term grrrrrr.
Faraway - hope you're doing ok - thinking of you. Morning Sheila - how are you feeling today? A bit better I hope xxx
Mavis - let us know when you can how you are. Hope you're doing ok.

Huge hugs everyone,
Hxxxx

Ps - still no man yet, lots of thoughts though!!!!!
2catlady
Member

Re: Bone mets - please join in

Good morning lovely ladies,how are we all doing?
Tracy,huge hugs xxxxx

Chocolate I'm sending my hubby (original one) on this cruise too.grrrrr
I totally agree about SCD . Who is voting for Scott and Judy ? ? They dance like me! Xxxxx

Faraway,good luck on Tuesday . We will all be thinking of you xxx

I think I'd try cold cap too. My sister is when she starts FEC on the 10th. Her onc said there was a 50% chance of it working.
Take care everyone and huge hugs,Helen xxxxxxx
Chocolates
Member

Re: Bone mets - please join in

Faraway - I feel for you but remember you come first and you don't have to get a grip - I think your oh and mine are well suited. I'll happily let mine off to join yours on some never ending cruise. I think tracy might want to send hers too!! With regards to work in my case it was better in the long run for me to be up front and straight with them. I'm now back at work and it's going ok - although I'm four days a week now. They have been very accommodating but I know that not all work places are like that. I hope yours are kind also and you can negotiate a smooth path. If you can I think you should see if you can have the first cycle off completely at home so you are not thinking I feel awful but I have to go in. This way you can see how you react and then plan if you can go in or not after each cycle. Better this way than saying you will be in and then not able to. That will stress you out as well. As for your op - you go girl. It's your decision and we're right behind you. Will be thinking of you on Tuesday - do you have to stay in?
Just watched scd - what a joke the bottom too - the dangers of how popular someone is vs the dancing. Oh well.
Feeling a bit coldy tonight - the curse of half term. Wouldn't be a break if I didn't feel well. Typical.

See you for roll call in the morning.
Huge hugs,
Hxxxx
carolsav
Member

Re: Bone mets - please join in

Hi faraway i had cold cap 10 yrs ago and it worked really well for my hair although i still lost it all wen i started on taxotere. I suffer from migeaines so wasnt sure i wud be able to put up with the extremw cold on my head but its amazing wot we will suffer to keep our hair!
Its certainly worth trying once ans see how u feel about it..
Carol x
Bevlaar
Member

Re: Bone mets - please join in

Hi everyone...hope youre all doing ok.
Chocolates...hope you start feeling better soon. Its miserable when you feel rough. As you know i was on a real downer last week and felt so rough but i can't believe how well I've been since! Feel great actually with hardly any breathlessness and even left off the oramorph for the last 4 days. I'm just coming to the end of my 6th cycle. Have to say, this has been the easiest so far!
Just goes to show that each cycle is different.
Wish they were all like this.
Brecon was lovely...although it was the furthest end of the national park in the Neath valley. Not far from us though. Only an hour away. Pity the weather wasnt better and we would have done more walking.
See u in the week ladies. Love bev xxxx
Tinkerbelle
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Re: Bone mets - please join in

Desi - have sent you a pm

 

Tink x

bertie1
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Re: Bone mets - please join in

Hi all hope we are all ok today.
Faraway hope your op goes well for you on Tues,with regard to having the cold cap while on Fec I had it when I had Fec 3years ago and I didn't lose my hair it just thinned a little bit and I continued to have it trimmed during treatment.It is quite tough but if you are determined it is doable.Just to add my hair was shoulder, length and I had it cut into a short bob just before starting treatment.A few tips I only used to wash it once a week whilst on treatment and used to leave it to dry but just finish off with a cool hair dyer to style it,in between washes I used dry shampoo and I used to wear a hairnet to bed so it didn't rub too much on pillowcases and used satin pillowcases.Good luck with your treatment.
Take care all
Kaye xxx
Desi-2
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Re: Bone mets - please join in

I know the feeling if only they put themselves in our shoes at times! Xxxx
Faraway
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Getting stressed about telling my manager got op on Tues then chemo for next 18 wks, not told any family or friends latest and OH says I need to get a grip....argh get a grip I will get a grip of something and that's for sure! Beam me up scotty please
Desi-2
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Hi Faraway wow what a contrast! Just goes to reinforce what they say about us all reacting differently! Good luck with your op on Tuesday I will be thinking of you. I decided to have my hair cut from shoulder length to approx 2 inch layered cut before chemo and was going to leave it then to fall out but when it did start to come out I found It quite upsetting when it came away in my hand every time I touched it, also getting a mouthful of hair when I turned over on my pillow at night wasn't nice (although hairnets was suggested) I just decided at that point to shave it off. Xx
Ethel_horner
Member

Re: Bone mets - please join in

Hi I had cold cap and kept all my hair. It has to be tight tight tight! If you are really motivated to do it you will. If you're not really don't bother. For the first 10 minutes you have to really concentrate on coping with the pain the cold and the panic after that it becomes tolerable. But it does elongate the process by hours. My boy cried when he thought I'd loose my hair so I was well motivated. However if there's a next time I won't bother as the inconvenience and discomfort was hard. Good luck! X
Faraway
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Hi Tracy, pleased you are feeling a little better today. My experience with FEC was after the second one it got easier, I even went abroad for a week between fifth and sixth (didn't tell my onc i did this though and took precautionary anti biotics just in case!).
Thanks to all for your thoughts, I have decided to have op on Tues and get it over and done with and start Docetaxel the following week which was when it was going to be anyway whether I had op now or not. I am going to try the cold cap this time, has anyone had any experiences with this? Is it best to have hair cut short before treatment starts and does that means really short?
Hope you all enjoy your Sunday afternoon, lot of hugs xxxxx
Tinkerbelle
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Re: Bone mets - please join in

Hi Everyone,

 

Desi - glad to hear you're feeling a bit better.  I think the steroids and chemo can make you very emotional.

You remember rightly - I wasn't too bad until the fifth chemo where I felt blah for the whole time and also had a chest cold; after the sixth I had fatigue which had to be experienced to be believed.  The good news is I am now five weeks post last chemo and feel completely different - more 'normal' and have energy.

 

I'm having trouble keeping track of everyone in the thread so (((hugs))) and sympathy to those I know are struggling and hope things are good for everyone who is doing well.

 

Tink x

Desi-2
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Re: Bone mets - please join in

Good morning Ladies hope everyone is having a good weekend! I'm feeling better today not so emotional, had to cancel what would have been my first visit to my son and his girlfriends new home, just didn't have the energy yesterday to get dressed even, so very disappointed but they are coming down to me in the week so not too bad. It's hopefully my 3rd FEC this Thursday will be halfway through. Apart from last few days it's not been too bad really but if I remember rightly Tink struggled after the 5th and 6th.
It's lovely to see you posting Sheila xx
Hope your feeling better Helen and Clive Owen Belinda! Good choice!! Chocolates I want some glasses like yours ha ha
Bev The Brecon beacons is somewhere I would like to go sometime hope it's been a lovely break for you.
Well being a couch potatoe again today and hopefully tomorrow will start to pick up in time for Thursday
Love Tracy xxx
Downbutnotout
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Morning all - which reminds me of starting infant school. We used to go into the hall for morning assembly and say, "Good morning teachers, good morning all." I thought they said 'hall', and I couldn't understand why we should say good morning to the hall. But then I also thought we were human beans.......

 

Just a little queezy today but generally much better, thanks.

 

I hope you're all having a good day. It's a mucky grey, blustery, showery day here.

Chocolates
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Re: Bone mets - please join in

Morning ladies, signing in for roll call. Flo I hope you've had a better night and just generally feeling a little bit better. What keeps me going is thinking that although I'm feeling rough the little uggers are being blasted so hang on in there Flo and let's hope that indeed the uggers are disappearing at a rapid rate.
Bevlaar - hope you're having a good time and weather feeling kind to you. How are you feeling - hopefully the breathlessness is easing. Look after yourself xxx
Tracey hope you are again feeling a bit better today - one day at a time so please look after yourself.
Morning Sheila - hope you are managing to feel better too every day.
Faraway - how are you doing - are you still juggling those options around in your head. We're here for you and hope you can feel us supporting you as you make your decision xxx
Tink - how lovely to see you - I'm sorry I missed you off my message the other day. How are you doing? xxx
Well no luck yet on the man side - lots of bad suggestions but trying to move away from them but admittedly finding it difficult - why are the worst the most attractive? Oh well - no breakfast in bed for me!! However the usual oh has cleaned the kitchen this morning so can't really complain.
Have a good day everyone.
Huge hugs everyone xxx
2catlady
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Re: Bone mets - please join in

Good morning lovely ladies,how are we all?
Oh,Flori,I hope you are feeling better now and no sickness and hope you got some sleep last night and an extra hour today (next time I need a note if you are going to be late )

Hi,Bev and Dexter ,waving back ,have a fab time xxxxxx

Sheila, looking forward to you posting again ,keep resting and look after yourself xxxxxx

Chocolate, any luck with finding a new man. I'm very happy with my three at the moment. Mr Hollywood has just brought me breakfast in bed ( strange how he looks like my hubby,it must be these glasses) xxxxxxxxx

Tracy ,how are you doing? How many cycles do you have left of FEC now? I bet your counting them down. Xxxxxxxx

Well our blushing brides had a fab day( they've posted on liver mets) so pleased for them,it's lovely to have weddings and our lulu's grand baby news.

Has any body heard from Mavis ? If she doesn't sign in soon I'll be sending the Wag man to her house (as we used to call them when I was at school ,now it's the EWO lol)

Well ladies I hope we all enjoyed SCD ,some lovely dancers on and some ...... Oh dear dancers.
Huge hugs and stay strong,Helen xxxxxxxxx
Downbutnotout
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Re: Bone mets - please join in

Hello ladies - and hello to Sheila, we haven't 'met' before as I'm quite new to the SBC threads (although only classed as local regional recurrence it's become inoperable, incurable and spread to skin). I'm glad you're home and improving and fingers crossed that the scan shows the treatment is working.

 

Tracy - sorry you had a spell in hospital but pleased you're home. Not surprised you're feeling a bit emotional. Hope all the pain goes soon.

 

Bev - hope you're enjoy Brecon. I went to agricultural college at Usk as a teenager and I love that area.

 

I had a bad night with the vomiting after yesterday's dose so had to get the on call doc out and didn't get much sleep, hence the late sign in - sorry for missing roll call Miss Helen .....been feeling those angry eyes homing in on me. Hoping to get the PICC line on the 3rd.

 

Enjoy the rest of the weekend everyone. Almost time for SCD.

X

Bevlaar
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Hi helen. ..waving back from brecon national park. 🙌 Sheila..so glad youre posting again but sorry to hear youve been in hospital so long. On the mend now though hopefully. Get plenty of rest 💖 We were all so worried about you.
Hi to chocolates tracy janette barton nicky faraway and everone else. Keep taking the tablets and big hugz to you all. ...love bev xxx
2catlady
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Yahhhh,our Sheila is back. So glad your out of hospital and on the mend. Denusumab is easy to have and no real SEs to speak of. Hopefully it will suit you too.
Make sure you rest up and take it easy lovely lady.we have been sooooo worried about you,massive hugs,Helen xxxxxxxxxxx
Chocolates
Member

Re: Bone mets - please join in

yes - our wonderful sheila is back - yaaayyyyy!  we have missed you - hopefully now you will begin to feel stronger and better each day.  I have denansomab and it is quite decent to tolerate.  Now rest up and when youre able we will keep you all entertained by reading through the last 7 weeks of our posts - not for the faint hearted I have to say!!!

Anyway - huge hugs to you sheila and thank you for letting us know.

 

Hxxxx

Tinkerbelle
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Glad to see you're back home Sheila and things are under control.

 

Hope you feel better and better.

 

Tink x

belinda
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Well you have been missed Sheila! Hope things now begin to get brighter and better for you. Take Care. XXX
JulieD
Community Champion

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Just a really quick one to say welcome back Sheila and how lovely it is\to see you posting, as you can tell we were getting worried. Sorry you've had such a rotten time, it's amazing how ill calcium and other imbalances can make us, pleased to hear they seem to have got it under control. Rest and get your strength back and just enjoy being back at home xx
roxy12
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Re: Bone mets - please join in

Hi to everyone. I hope Im back fp a bit this time! I have been in hospital for three weeks due to high calclium

levels and have felt really unwell.Also I have started with neuropothy in my fingers so have to use my computer instead of my i pad.

I havw been in hospital about five weeks out of 7 and dont want to go in again!!

They seem to have found a way to control it anyway. I was going in for re hydration and as soon as i went home it would shoot up again. My daughter said I was confused when it got really high. Anyway about 3 weeks ag they gave me an in injection of Denusabab (havent spelt that right) and i am staying stable without rehydration.It is given 3 to 4 weekly and I am having another infew days with my chemo. I still feel very weak but much better thank God. It's good to be home.

Have lost about a stone as I wasnt eating but have put a bit back on. Brains not in the right place yet but hopefully it weil get there. I am hoping there will be a scan soon to see if the chemo is working.

Anyway I think my fingers are giving up .Thats another pain!

Hope you are all keeping okay. Thank you for you concerns. I will try to catch up with all your posts. and speak soon.

 

Love to all of you. Thinking of all. Lots of love sheila xxxx

belinda
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Re: Bone mets - please join in

Oh dear glad I'm not on the U.S. Site Helen. 🙂 How about Clive Owen Chocs, might be a tad old for you?
2catlady
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Re: Bone mets - please join in

Hi,chocolate,yes,half term yippee! I've sent Sheila PMs and they haven't been opened and like you fearing the worst 😞 it's been a month since her last post.

Belinda,yes,hopefully someone might know she's on face book. I'm not sure if she's on the USA site as I stopped that,too many religious nutters ( if I read one more time at how lucky they were that god had chosen them for cancer I'd scream) and creepy men wanting to add me to their friend list! And it wasn't mr GC !!
Yes,SCD I do mean strictly . Yes,I know what you mean C does creep into every thing without you even realising ,dammed disease.

Oh well chocolate ,we must get our thinking caps on for new man for you. Mr Hollywood does my cooking,mr Steve from SCD is strong so he can do most anything and get rid of spiders ! Mr Daniel Craige is just pretty to look at so I'm set! I think you need to be like me and have a mixture xxxxx I will share if you are stuck though xxxx
Huge hugs ladies xxxxxxxxxx
belinda
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Hi Chocs is Sheila in the Facebook group? Under another name perhaps? Always difficult when you notice someone suddenly stops posting. X
Chocolates
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Re: Bone mets - please join in

Morning lovely ladies, sorry for my lack of posts. Really busy week with treatment yesterday. Thank goodness it's half term.
Faraway - huge hugs my lovely lady. You've had a very difficult week haven't you? And now this decision must be a difficult one too. However, we will be here whatever you decide. You're doing the right thing - mulling things over and not rushing your decision although the timescale is tight. If your onc thinks a week is enough time before you start chemo then it clearly is an option to have the surgery and then start. You will make the right decision for you faraway and I think the only advice I can give is it should be your decision - no one else's.
Desi - so sorry you've not been well - it's always frightening when you feel like things are out of your control. I agree with Helen - you did the right thing. Better to be safe than sorry. Let's hope you continue to feel better every day and your next session is not as difficult.
Helen - I hope you are now feeling a bit better - it's inevitable that we will have up and down days but when the down days come they can be hard to deal with. however we are all here for you and I hope you felt us all holding you and sending lots of love to you through our positive vibes. We're such a lovely family aren't we?
Flo - I'm glad treatment still went ahead - have they set a new date for your picc line? My veins are also too but thankfully I have a port so it's much easier - couldn't manage without it.
Morning everyone else - Janette, Kaye, Nicky, pam, Belinda, Lynn, Dani, Mavis, Bevlaar, carol and everyone else - sorry if I've missed you out. Ladies - I know the message was sent to Sheila but I haven't heard anything back. I can't help now but fear the worse - so so difficult but it's been a long time now since any contact. Wherever you are Sheila - we all love you very much xxxxx
Right ladies - things to do today - have a great weekend everyone. I'll be on more now as its half term to bug you all. Looking for a new man - any suggestions most welcome - however they must be available and willing to spend lots of money on me - not too much to ask!
Huge hugs everyone,
Hxxxxxx

belinda
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Have a restful weekend all. Helen how sad and BC obsessed am I? Was trying to work out what Secondary Cancer D night was in your post....doh Strictly! Hope you are feeling better soon. Happy hols to Bev, glad you are home Tracy. Love to all who post here. And those who prefer to read only too. X
2catlady
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Re: Bone mets - please join in

Good morning lovely ladies,how are we all doing?
Tracy,how are you feeling today?xxxx thanks for asking,still a bit rough,counting days till week off lolxxxx

Faraway,glad you could talk to your BCN and get some answers xxx

Oh our Bev is on her jolly hols now,waving to Bev running up the hills with her Dexter xxxxxx

Chocolate,hello,are you nursing a huge hangover after your fab news and can't post lol. Or are you celebrating with Mr C !!!!! Missing your posts.xxxxx

Mavis,how are you doing,you have been very quiet for a while too xxxxxx

Hello to everyone else I'll not list as I'd hate to miss someone out xxxxxx

SCD night tonight yippee!
Huge hugs,stay strong,Helen xxxxxxxxx
Desi-2
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Thanks Helen hope your feeling better now aswell. I posted before reding back that you had also been feeling unwell.
Love Tracy xxx
2catlady
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Re: Bone mets - please join in

Hi,Tracy,huge hugs xxxxxx I think having to stay in hospital will make you emotional . Don't be hard on yourself you did the right thing ringing hospital. This is your first chemo so you have nothing to gauge it against .
Try to get plenty on rest and be kind to yourself,massive hugs coming your way,Helen xxxxxxxxx
Faraway
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Thanks for all your messages. Went to see BCN to talk things over and she said onc was ok with op as long as there is a week between op and chemo. I have left it that op will go ahead next tues but wanted the weekend to think about it more. Thinking I may be putting my self under to much pressure to have op and then chemo a week later xxxxx
Desi-2
Member

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Thanks Tomboy and Nicky for comments on FEC. Bit worrying as I am triple negative but I will query this when I see the onc on Tuesday. So sorry to read about your progression Faraway.
I've just got home after a short stay in hospital. Called an ambulance Wednesday night as had sudden chest pain and was put on blood thinner and IV Antibiotics as a precaution before bloods were in. Bloods were ok if a little on the low side and feel rather foolish now as I think the pain was muscular but was running a slight temperature. Now tummy and bowels very sore, chest pain which spread to shoulder now worse after showering and all possibly because I overdone it. Full marks to hospital for covering all possibilities but kind of wishing I had waited a bit and not panicked. Being in hospital has really brought me down emotionally for all sorts of reasons... Feeling sorry for my self hope it goes soon.
Love to everyone else xxx
stresshead
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Hi Faraway..dont know if this will help much but i had a fat transfer folowing reconstruction..its all ok til the anaesthesia and pain killers wear off then you feel (and look) like you've been hot by a train. I had a few days off  work but had horrendous bruising on my side , buttock and down my leg which was painful to sit on for quite a while. Not too bad really but dont know how i'd have coped with this and the side effects of chemo. Sure you'll make the right decision.x

Downbutnotout
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Good afternoon ladies

Damp and grey in Cumbria today - hang on, as I write there's a bit of bright peeping through.

Helen - hope you're managing to rest and pick yourself up.

Faraway - how frustrating to have this dilema. I can see how it might seem a bit less important than it was last week but over the coming weeks it might raise up the priority list.  I agree with the other ladies - talk to your onc to gain their opinion and if they think it's doable it might be well to just go ahead.

Janette - best of luck with the bone scan.

Well, I'm off for my next dose of Gem. Didn't get the PICC line yesterday because my neutrophils were too low so it's back to the cannula, drat. But at least I don't have to delay treatment, so that's a bonus.

Take care all.

Flo

X

bertie1
Member

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Morning all ,Helen sorry you're feeling a bit rough have a restful day and put your feet up you deserve it.
Faraway I would definitely get in touch with your Onc to ask their opinion if it's troubling you.Hope you brides have a wonderful day.hope everyone else is ok ,have a lovely weekend everyone.
Kaye xx
nicky08
Community Champion

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Hi faraway, it might depend on when you're expected to start chemo. I had a few weeks before I started mine but knew it was going to happen! Also another lady is still taking her holiday before starting chemo. This may give you and your body time to recover from any surgery and get your immune system back up and ready for the chemo if its not happening right away? As the others have said it might be worth asking your oncologist or getting this question to him via his secretary as it's obviously troubling you and you would like to know a definite answer I'm sure.
Nicky x

2catlady
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Good morning lovely ladies and our blushing brides.
Lovely and sunny in NE.
Still feeling a bit rough but okay thanks.
Bev,tut tut for going into work. Make sure you have a fab time on holiday and REST! Xx
Faraway,I second what the other ladies have said xx
Have a great day everyone and huge hugs,stay strong,Helen xxxxxxx
pam01
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morning everyone.....dull dank day here in s. Wales.....never mind lunch and denusomab later!....Faraway..worth asking your onc how long this would pospone chemo..and how soon ideally he would like to start it...something firm to make a decision on!

hoping our brides are each enjoying their days.....

Good morning Helen!xxx 

belinda
Member

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Hi all, hope you are ok today Helen? Hi Faraway, I would definitely ask your Onc about this, can you ring his secretary? Just thinking he will be able to advise. Have a good weekend everyone, boo just remembered the clocks change this weekend, I think. X
rosie53
Member

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Hey wakey wakey Helen!!! Where are you???
Missing your morning greeting today 🙂
hugs Janette x
rosie53
Member

Re: Bone mets - please join in

Hi Faraway, im really not sure on that one, have thought about asking your onc/bcn and the doc who is to do the op for some advice? I understand what your saying about having to wait maybe another 12 months if you cancel but i also get what your OH is saying too. Why don't you take time to think about it over the wkend.
hugs Janette x x
Faraway
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Thank you all for your kind and thoughtful messages, I am still trying to get my head round everything. One pressing problem is I was due to have a fat transfer on Tues to complete my recon but my OH is trying to persuade me not to have it done with chemo coming up, he thinks it will all be to much for me. I don't know if it is as important now but it was last week. If they take me off this list I will not go on until after chemo and then an average of six month wait we are talking another year before it done. What would you do? Any thoughts/opinions would be appreciated xxxxx
rosie53
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Morning ladies, very wet here in Manchester today.
Faraway i hope ok, been thinking about you.
Im off for my bone scan today 😞 really don't like having them they seem to take forever...too much thinking time lay there!!
Love and hugs to all Janette x x
Lucy_BCC
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Hi Faraway
I am sorry that you have had this news, it may help to talk things through with one of our helpliners and you are welcome to call for further support, weekdays 9-5 and Sat 10-2 on 0808 800 6000

Take care
Lucy BCC

Bevlaar
Member

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Oh faraway...you must be so upset at the news youve had but all i can do is send you a huge cyber hug and reiterate what the others have said....that there are long term survivors with liver mets on here. Try and keep positive and I'm sure you'll cope with the new treatment. 💖💖
Helen...so sorry but I'm going to get the angry eyes! I went into work today because i felt so much better! Short day though and me and hubby are off tomorrow to spend 2 nights at Craig y Nos castle in Brecon. Its a fog friendly accommodation so Dexter the dog can come with us and enjoy lovely walks in the National Park and on the Gower beaches!
Will be wrapping up warm...promise 😉
Hope youre coping ok with your aches and pains.
Have a lovely weekend ladies....love bev xxxx
bertie1
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Faraway so sorry to here about your progression to your liver,I know you feel devastated at the moment but stay positive as there are still treatments out there for you and once you start your treatment you might feel a bit better.I was diagnosed with secondaries in my liver in August and I was devastated at the time ,but after joining this forum and talking to other ladies it has helped.Good luck with your treatment .
Kaye xx
carolsav
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Faraway i am so sorry to hear bout your progression. Of course u must feel devastated and scared. I cant begin to understand how u feel rite now but i am thinking about you and sending u love. My husband has liver mets from 2007 and as the other ladies have said thev liver is a strong organ ans i am sure your onc will offer u the best treatment possible.
X