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Bone mets - please join in

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Re: Bone mets - please join in

Fantastic news Claire - over the moon for you. Enjpy Cornwall

Katie xxx
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Claire, fantastic!
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Claire - that is such fantastic news and you will really enjoy the trip now!! Here's to the zoly and Arimidex continuing to do their job.

Liz x
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Hello everyone,
Just wanted to share my good news. After my BC had spread to my ovary I had it removed and was told it had spread to my liver also. I had six lots of tax and was told by my ONC today lymph nodes in abdomen so small now as not to be a concern and they think it was never in the liver it was just a cyst. I asked about my bone mets and he just said, yes, your bones are still abnormal and did I still want to continue with the zoly treatment, having said at the half way scan they were healing up. It is the best news I could wish for in the circumstances. I'm now on Arimidex and said I still want zoly and will have another scan in three months time. I shall be able to really enjoy my trip to Cornwall this weekend now, yipee!
Claire
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That was a bit of a day, Val. Still, as long as you are going in the right direction, that's the most important thing. Went on our bikes today on the prom in a dry moment when the sun was actually out!

Had my flu jab last night and so far (hope am not speaking too soon!) been fine. Had a couple of paracetamol at bedtime just in case but they help my back anyway.

Liz x
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Hey Val
I'm knackered just reading your post! Crikey, you do have a lot going on, but hopefully your sorted for now. Thanks for the flu jab reminder, I must sort that out.
Big hugs
Zoe xx
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Hello Ladies, I spent most of the day at hospital yesterday. I got a call in the morning asking me to come in early (got there around 11 am) before my 3pm appointment because my bloods (HB) were only 8.9 and they wanted to cros match and get me 2 units of blood.
I got my Bone strengthener first which was good while we were waiting for the blood to arrive (usually takes 2 hours after cross matching). First unit went to plan but the second unit caused a reaction and my temperature soared so they had to monitor me closely and slow the transfusion down form a 2 hour infusion to a FOUR hout one! The unit closes around 6 30pm so they had to wheelchaor me over to the BC ward to complete the transfusion and I didn't get away ubtil 8pm! Luckily I do not live far from the hospital but boy was I knackered. I have also been given more steroids and after Friday when my current ones finish I have to take the new ones on alternate days. I also got my next new lot of Capecitabine and started that this morning. What a lot is going on!!
I went out for a little while this afternoon and had a little walk but I thought I would have a bit more energy but I got tired quite quickly. I see my Gp on Friday for a chat and to ask aout a FLU jab ( have you ladies booked your appointment for one?) and nexst week it is my review appointment with my Orthopaedic Consultant. But all seems to have gone well there and there is an improvement every day. Getting my independence back at last.
Hope you ae all doing okay with your treatments and side-effects. I have read all your posts and it seems as if we are all busy at the moment. Take care, gentle hugs, Val
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Afternoon everyone!
I'm back from the hospital. I've had my medicine and so far ok. Managed to finish one scarf and start another! So not completely a waste of time.
Na7asha - if you tell them at the hospital about being bunged up they'll give you super stuff. I think it's called 'Movecol' or something like that. Worked wonders for me.)n a different note - I recorded Paradise last night so have that to look forward to. Was it any good? Enjoy baking your brownies. I've got a cake to ice for my local Macmillan coffee morning on Friday. I hope to make it look like a coffee cup - not v original but doable. Anyway will be my little project for tomorrow and a break from the knitting!!!! Enjoy your coffee morning. It'll be nice for you to see everyone at work. Loving the evil laugh by the way!!!!!
I enjoyed livechat last night - it was good to 'talk'. I need to practise typing quicker though. I am still a 2 fingers typist!!!
Well think I will motivate myself to do something away from my chair. I have the delights of sorting out the washing and making tea. Think I'll also go to Al's school's PTA AGM - I love knowing what's going on. No doubt my name will be put down for face painting at the halloween disco.
Don't know what I am going to do tomorrow with no hospital appointments - think you are right Lucinda I will be having withdrawal symptoms!!!
Anyway hope there are some of you have managed to experience no rain. It hasn't stopped here.
Katie xxx
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Afternoon!

Just watched the last Parade's End and really not sure what to make of it at all.....nice period drama but something not quite there but then does it have to be??? I have the book on my kindle and was going to read it before episode 2 but of course didn't so may have a look at some point now the nights are drawing in. Was going to watch 'Paradise' but then heard it was done by those who did Larkrise and although I love period dramas, that never did it for me.

Got copies of my last bone, CT and MRI scans today. I requested them at clinic and the registrar has duly obliged with a covering letter saying how nice it was to see me again and she will look forward to seeing me again in 3months - all very friendly and she is a nice lady. Lesions in cervical discs (probably wear and tear as I had problems there years and years ago), then T8 and T9 all affected, along with T12, L1, L5, sacrum at S1 and iliatic something (front of hip bone at top!). Defined lesions on liver and kidney cysts but all as 18 months ago there. Doesn't feel like I have all those nasties in my body but it's good to know that you can still have all these dodgy bits and feel ok and go on hols and not have oncs unduly worried!!! The bone scan report did start 'Unfortunately, there have been several areas of progression.....' but comparatively speaking, it's not that much in the scheme and timescale for me. Hope this gives hope to some of you newer ladies.

Managed to go out on electric bike today on the prom in the sunshine!!! Picked right time of day as it's raining again now. Am hoping weather will be kind to us on Fri as Mum is doing a coffee morning for Macmillan and has baked loads of yummy stuff and has a lot of older ladies who try to come as they know how much my family have been affected as well as their own and others.

Love to all boney ladies xx
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Afternoon my lovely boney friends. Happy to report that am on day 2 of first cycle of FEC and apart from intermittent constipation pains (got me into a bit of a tizz last night if I'm honest), all fine. Nothing appears to be happening. Soooooo, guess I need to watch this space and not congratulate myself too early. But still, happy thus far Smiley Happy

Liz and Katie - I was late to chat last night because I was watching Paradise. Not sure I'm hooked yet, but like you I'll watch any period drama. Havent caught up with Parades End yet...may get around to that later. Off to make brownies for a coffee morning at work. Although I feel like I'll stick out like a sore thumb considering the occassion. Something I feel I need to do all the same.

Val - hope you got on OK yesterday?
Katie - you'll be getting your drugs now, hope the day passes quickly for you and you have an easy ride with side effects, Remember, the little fecker bc will be getting a smack round the chops and feeling far worse off than you. Mwah ha ha ha (evil laugh)

Hope everybodys day is pain free and jolly. Hugs xxx
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Have not been on for a few days so trying to catch up on all the posts.
Val hope your bloods are good and pleased you are getting aorund better,especially the driving bit.

Dawn so pleased you have had the darling babies with you and they are coming on so well,my first grandchild due just after christmas and can't wait.Hope you are enjoying your new toy.I was at Sutton today for my 3 monthly check so we may have passed in the corridors.Seems everything stable at the moment (other than sciatica down both legs) so back for scans and clinic just before Christmas.

katie no more rads .....hooray!!!!!!! .You will probably get withdrawal syptoms

Liz so pleased you had such a lovely time, venice was on my wish list but have given up on flying at the moment,planning a short trip to the New Forest next week-luxury spa hotel of course!

natasha good luck with rads and remember duvet days are a compulsary part of the treatment

rocketqueen I have to agree with everything lizcat has to say. I have had exstensive bone mets since May 2009 and there are many different reatments.Hope you get the answers you want from your mum's onc.

Big hugs to all xxxxxxxxxxxxx
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Rocketqueen - am sorry about your mum's secondary diagnosis. I hope you get plenty of info when you speak to the consultant on Monday - note down any questions you think of beforehand, no matter how 'daft' sounding and do remember that no-one knows how long anyone has with this disease. Just to say, I have been on zometa for 4 yrs now and whilst it doesn't get rid of the disease, apart from a couple of blips here and there, I am relatively ok. In fact I've just come back from a long weekend in Venice with a friend after some recent spinal progression. Had a ball and can't wait to plan my next jaunt!! I'm not saying this will always be the case but I grab chances while I can. When I was diagnosed with primary and secondaries to bones at same time in July 07, I had a 20% chance of making it this far. A secondary diagnosis takes some adjusting to but you do learn to live with it. I don't have a Macmillan or breast nurse assigned to me by the way and use people on here to bounce ideas off.

I hope you can all feel a bit calmer in due course and that your mum tolerates her treatment better this time round - first lot is always a bit of an 'into the unknown'. Any queries, just ask on here - there will be someone to help I'm sure as plenty have been around for a lot longer than me!

Liz
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Hi I'm new here. Firstly this is a great thread with lots of inspirational stories. My mum was diagnosed with secondary breast cancer With bone mets only in july this year after breast cancer in 2006 and a lumpectomy and radiotherapy. I have yet to speak to her consultant on Monday about the stage of her disease and prognosis but I would like some help and hope! The mets are in her entire spine, 2 ribs, scull and a spot on shoulder. She had treatment 3 weeks ago of herceptin, which she is still ill from, and zometa. She had more zometa today. Her Macmillan nurse expressed the seriousness of the disease by telling her she has months not years left to live. I know that no one can me tell me how long she has left but does anyone have experience of this? Thank you
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Katie - no smell in Venice that we noticed and we both have a good sense of smell cos we're blind as bats! We both got bitten by mosquitoes, though not badly. I have about 6 all down one side and thought I heard a buzzing in the night so reckon that was the offending insect! I am very tasty for the mozzies....although sadly not the Italian men, bottom not pinched or even a suggestion of a pinch. Must be too old and unglam for them! My mate has never been bitten by mozzies before but ended up with about 8. She had a few Italians smile at her but again no bum nipping! I'll email you a few pics. Only got as far as watching this week's Downton this afternoon so Parade's End will be another day. Going to record Paradise tonight as it's on at similar time as chat. Celebrate finishing those rads!! xx
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Hello everyone,

Thought I'd post before I go to school and pick up Alice. No doubt I'll get the obligatory ...'I forget' ...when I ask her what she's done today! I'm going to get her to help me make a cake this afternoon for the McMillan coffee morning this Friday. I can't cook - I am hopeless - but I love to bake. My idea is to make a chocolate cake that looks like a coffee cup. Fingers crossed it turns out that way.
I don't think it has stopped raining here for one minute today - it's rubbish.
Had last rad today - woohoo. It seems like I have been doing that trek to Christies for months. I am such a drama queen. I don't know how people can commute on the motorway every day. My hubby does and I never realised how bad it was. Anyway I'm glad I work locally (when I do work). The team were lovely. I obviously sub consciously wanted to be on their side of things as bought a pair of trousers from Asda which were the same colour as their uniform. They did offer to get me a tunic top so I had a matching set.
Liz _ I am so pleased you had a good break away. Strange question but did you find Venice smelly? I remember the smell hitting me when I went many years ago and the fact I got my bottom pinched!!!! Beautiful place tho! Any nice non-pinching Italian men? Oh did you watch the final Parade's End? What did you think? I want to watch that new programme 'Paradise' on BBC tonight. Just up my street - a period drama.
Well I've packed my book, my ipad, sweeties and have my knitting ready to go tomorrow. Been told I'll be in hospital for 6 hours after first herceptin. I'll be climbing the walls.
I suppose I better get ready to go to school - umbrella at the ready.
Katie x
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I love the wittering too Smiley Happy it can't all be about our rotten bones can it. I'm off in a few minutes for an onc clinic appointment to get the results of my mri & ct scans - although I already have the mri ones. Not sure how I feel about the CT scan. I haven't been unduly worried but there is always that niggle of the 'what ifs' isn't there. I have always said I don't want regular scans and they have respected that. I think it is 2 years since the last one.

I have had such a lovely few days. My daughter and the grandchildren have been with me. Her OH had an all night cycle race and so she wasn't on her own that was the bargain that he brought her here. I have had my fill of baby cuddles and feeding/changing them and it has been wonderful. Although they are now about 11 wks they are still very tiny - perfect little miniatures. I hope it helped daughter to have a good rest as well.

I have just indulged in a fab new mobility scooter. I might as well spend my DLA money on something useful. It was I have to admit expensive! but exactly what I wanted. I don't need to use one all the time but have been so frustrated when I want to go to huge shopping malls or where the shops are well spread out and having to limit myself to one major store because I can't walk that far without a lot of pain and exhausting myself. Can't wait now to take it on its first expedition.

Na7asha like you I love gadgets! and am in the fortunate position of having my own company so can treat myself to things that can be 'useful' for my work Smiley Happy. Am thoroughly enjoying my latest toy - an i-pad.

Right time I was off to keep that hospital appointment.

Dawn
xx
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Natasha - oh you don't have to drag yourself out of bed.....or if you do, make it to the sofa. You're right, my friend is mad and we had such fun!! She's had her own really bad time while I've had bc and we always said we would go away and finally made it. I'm supposed to be the steadying influence in the friendship but made her pose for lots of the pics!!! Love her to bits, especially at bonkers moments. And when she tells everyone I'm about 40-42 when in fact I'll be 48 in November . Chat tonight, I hope xx
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Hello ladies. Sorry I've not posted for a while, I can't from my mobile...but I do read what you've all been up to.

Katie, yay to the end of rads and onto the next chapter. Am on FEC. 1 cycle of 6 down, started yesterday and so far am feeling good. OH commented that I'm full of beans. Fingers crossed I escape any hideous se's. LOVE your rambles and think your top tip was fab.

I've been thinking I need something inbetween a laptop and phone so I can surf, post and read... so if I'll look into that kindle I think. Love shopping for gadgets but I used to get all my kit from work. Had to give the ipad back. Not all bad, I still get a mobile and laptop. Hmmm, just mentioned this to OH and he's pulled a face. booooooooo. He doesn't see why I can't use the laptop. boooooo again. Will research anyway and see where we end up.

Val, hope you get on OK today and the time flies with your book. Have you been watching the latest Gordon Ramsey series, think I may want the book. http://www.channel4.com/programmes/gordon-ramsays-ultimate-cookery-course

Also really enjoyed Nigella last night, I love Italian food so I may need that book too. Haven't got anywhere near as many as you though.

Liz, hope your OH is well enough for you to travel. Glad you had a good time in Venice, your friend looks like a lunatic - great fun. Hope you do well this week lovely.

Anyway ladies, I really should drag myself out of bed... I know, shocking isn't it Smiley Happy

Love to all xxx
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Hi ladies!

Hope you are all feeling better than the weather.......after my long weekend away, my bedroom looks like a bomb has hit it, ironing needs doing along with changing my bed linen, washing and ironing it so I suppose today is as good a day as any to do it! Then I can sit and watch Parade's End and Downton from this last week, armed with a brew and cake.

Katie - woo-hoooooooo to last rads. That seems to have gone really quickly to me, though probably not to you! Just remember the cooking still keeps working for a while afterwards so make sure you get enough rest etc. Know what you mean about Parade's End - see what I think after last episode.

Val - hope you get sorted again with bloods dept and your count is boosted. Like you say - get it over with on a rubbish day rather than a good weather one!

I always said I would NEVER have a kindle as I love the idea of having a 'proper' book and nothing else would be the same but my late bc pals Sue and Sally said they were ace, so I got one and it's fab. Still have real books but have now pre-ordered the new kindle fire due out next month. From what I can gather you can go on internet and things with it. I have no idea really but it looks promising......we will see.

On the medical front, my back wasn't too bad while I was away and I survived the flying without it crippling me completely so that was a result. It certainly didn't spoil my hols at all. Supposed to be going down to Southampton this weekend til middle of next week for my uncle's funeral. Am really going so Mum has company on the long trip and she is going to support her sister. However, OH has been a bit off still so if he's not ok, I won't leave him in case anything happens to him!! Have the joys of my flu jab tonight........

Hide under the duvet girls and keep as warm and well as possible xxx
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Katie, I love the wittering. best part of al the posts! LOVE books too and am a collector of cookery books and must have between 200 and 300 but am going to have a good weed out and pass many of them on to my family and friends and some to the charity shop where I picked them uip from originally. I just love reading them. Especially Nigel Slater. I bought 3 new cookery books in Tesco at the weekend because they were so cheap and really interesting. A Hugh Fearney, A nigel Slater nd that girl Lorraine Pascall Think that is her name) that is on TV,
I was heading off this afternoon too but have just ghad aphonecall to say my HB is down to 8.9 so am going in after I get washed and dressed to have 2 units of blood before I get my normal infusion. So just as well I have a good book on the go. It is so windy and wet and dull here that I may as wel get it over with as tomorrow's forcast is good!
Glad that is your radiotheray over Katie. You will wonder what to do with yourself now. I love this eyelashes on cars. i have got a Renault Grands Scenic which is great for getting my wheelchair and crutches into. it is a mobility car and I do not know what I would do without it.
Must fly. Breakfast ready before I head off. Love to you bone mets ladies, Val
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hello Val,
You've been busy. Great news about your driving. I hated not being able to drive after my op. My hubby kept borrowing my little mini whilst i couldn't drive. He got too attached to it!!!Anyway I came up with a cunning plan. I put eye lashes on her around the headlights. he hasn't.t driven it since. My car is now talking point when I'm out and about.
I.m busy knitting at the moment. the only thing I can make is scarves so that is what everyone is getting for Christmas this year. so spent the afternoon catching up on Parade's end on the I player knitting. I can't make up my mind whether I actually enjoyed the story. Downton abbey on the other hand was highly enjoyable.
Off to bed in a bit. Another early start - due at Christies at 8.20 for last radio - yippee! reading Peter robinson's new book. Usually love a good detective story but finding this one a bit predictable. got the new val McDermI'd and Kathy reichs waiting so here's hoping a more interesting read. I got bought a kindle from work but love nothing better than a real book. I am So old fashioned.

Sorry for wittering. Hope everyone is well.
Katie x
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Glad you had a good trip up here in Scotland Katie. You timed it well as it is like winter here today, windy, damp, cold and overcast.
I have been for my blood tests today ready for hosp late tomorrow. I have been away to the library to collect one book and came back with 6! The up to Kinross to Vane Farm Bird Sanctury to buy new birdfeeders and more food for the oncoming wintery autumnal days ahead. OH has them already set up so the birds will be in heaven tomorrow trying out their new toys.
I had planned to do other stuff today and was going to skin and prepare a fresh chicken to have as a Tandoorie chicken and let it marinate in a box overnight in the fridge....but did so much outdoors today we ended up eating a ready meal from waitrose a chicken Vindaloo that we had popped in to freeer. Still cannot do it all.
I had a short try of driving today for the first time since my hip replacement. It went well although the left leg did feel a little odd...it did function as it should. But I only drove for a short while and then let my OH take over. Did not want to spoil things. But would maange to drive up to the little shop up the road now for milk and bread. It is uphill so no use for wheelchair or crutches and would mean I could do a little shopping myself.
I got invited to abookgroup I used to attend all the time. It is just a one off meeting to catch up but they have chosen a biography about Dickins and I have until Novermber to read it. I think it is a newish book so ordered it today form my nearest library.
I hope you are all okay. take care, val
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Hello everyone,
I've just returned from a beautifully sunny Scotland! As soon as I hit Lancashire it started chuck it down. Typical! Totally shattered now. Only 2 more rads to go!!! Woohoo! Beginning to be apprehensive about Wednesday and the start of herceptin and zometa but know I just need to get on with it. I just hope it doesn't knock me for six.
Na7asha - good luck too for the start of your chemo. What are you going to be on? I have a great tip for if you lose your hair. My friend was also going through chemo at the same time as me. When we started to lose our hair we both decided to shave it off. My mum did mine. Anyway afterwards my friend told me that when you have the stubbly bits the best way to get them off is by using a lint roller. It is hilarious but it works - honest.
Helen - I am so glad you got sorted.As for the customer can quite understand how you felt. Some people are so stupid. I don't think they mean to be but it doesn't make it any better. I hate that 'look' you get from some people when they find out you have cancer. I could slap them!!!
Claire- I've been off since January - having chemo, op and now rads. I often feel like this year has been a waste of time and I could've done so much. It is hard to get motivated. Helen's right though - don't be hard on yourself. It's hard I know if you are used to being busy but we just have to remember our bodies are busy trying to fight this blooming disease. I try to see anything in the past I would've taken for granted (like going shopping, cinema, going for a walk, doing planning for school etc) as a sense of achievement if I do one thing in a day. If I don't manage anything so be it but it can if I'm honest sometimes get me down. What I'm trying to say probably really badly -is that you are not alone in feeling like you do.
Anyway hope everyone has had a good weekend and battening down the hatches for the stormy weather predicted for tomorrow.
Katie x
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Hi everyone,I have seen oncologist this week and he assures me that I have an infection in my breast called cellulitis it's still very red and tender on two lots of antibiotics has anyone had this infection aswell ? Clare totally understand how you feel about worrying about exercise and not getting things done I have days like these all the time please don't be too hard on yourself easier said than done !! Had a customer at work other day point out that I had a grim future and that I couldnt really plan 4 a future and how did I cope mentally with it all !!! I was bit p@@@ed off with his attitude honestly think some people think we have no feelings whatsoever any way my moan over wishing you all a good wk end x
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Hello everyone,
Val, I hope you are feeling a little better every day after your op.
I'm finding it difficult to express how I'm feeling at the moment. I had my scan last week, end of chemo for secondaries, and will see ONC next Thursday. Through chemo I feel I didn't make the most of my time or saw my friends enough, didn't exercise enough, didn't do more with my time off work. Now, I'm worried about next week but realise there is no point in worrying. I'm feeling very well, no aches or pains and no real tireness so sometimes feel optimistic but DO worry the chemo hasn't done all that it should. Had a letter from work about returning in three weeks time, this worries me as all is different there after a restructure so everything will be sort of new and I'll only be paid statutory sick pay after September if I don't go back. I feel I'm not making the most of my days. I don't think it's depression but a sense of limbo. I feel I should be doing so many things but just can't seem to motivate myself. Perhaps I'm just being a moaning minnie but any advice would be appreciated.
Love Claire
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Hello everyone. Am just back from a couple of days in Cornwall. Absolutely gorgeous weather and I feel like I've gained 5 stone as we've had some yummy food. Had to make the most of pre chemo days.
Good luck Katie and anyone else starting treatment next week... eek. Fingers crossed for as few side effects as possible eh. Lots of love xxx
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Poor vercos, Hope you have a chance to chill for a wee bit. You seem to be awfully busy right now. Thinking about you. Val
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I am here, just knackered. I was on a business trip to Nottingham for a couple of days. I am shattered. I have to go to Budapest next week. I love his city but I will be too tired to enjoy it after all my meetings. I need to take it easy during the week end. So much to do.
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Where is everybody? I know some are away or on holiday. We have some lovely sunny weather up her in Scotland and the weekend is meant to equzlly good.
Nithing new to report. I have had a busy day. Came home, watched a little TV but nothing on tonight that take smy fancy so I think I will head up to bed with my new book.....a murder....by Stuart McBride called "Dark Blood".
Went to Ikea this afternoon but my Oh pushed me in my wheelchair to the areas we wanted to go to. Nothing exciting, a picture frame, some tea lights, some nice new towels (seeing I dispatched a load to my YD who needed some for her cupboard).
Had fish and chips on the way home so no need for any cooking or dishwashing. what a woman of leisure. Think these steroids are suiting me!!! Love Val
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Tulip you are doing the right thing getting out to see friends.I recently did an online course with Macmillan called Wellbeing and their idea was to have a goal each week to acheive,something to look forward to and aim for.
Walking and getting freash air is important,both for the exercise and we need natural vitamin D for bone health, so getting as much sunshine as possible is important.
I have found it difficult to get any advice on exercise,was told not to do anything loadbearing.I have a gym where i live which is free for all residents and it is a shame that most of the equipment is unsuitable.Swimming is really good and I would ask your team about yoga.I would think it is good to do for stress as well as exercise.
I also meet up with some lovely ladies I met through this forum for lunch,when we can all get a clear window without treatments.It is great to talk with others who understand,are not worried about anything you want to talk about,and there is also a lot of laughter.

katie I have my zometa tomorrow,had bloods today which should have been simple but took ages.I have a port fitted so it takes a couple of minutes but had to wait ages for a spare chair in the chemo unit.So pleased you had a lovely night out with hubby,so pleasing to go out and feel as if life carries on as normal.Enjoy Scotland and good luck with going back to work.I know what you mean about feeling lazy,since I retired I live life at a leisurely pace and am really put out if I have early appointments-takes me ages to get moving in the morning.
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hi
It is interesting to see your comments regarding exercise, as I wasn't sure whether to continue with yoga if my bones are fragile.
Trying to get out for at least a short walk daily to get some air & exercise.
Even though it is early days for me, I have found it helps to have something planned for each day, whether it's meet friends for lunch, invites someone round for coffee or even going with hubby to do the shopping.

Tulip3
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Evening everyone,
Val - it is good to hear you sound 'brighter' in your posts. Did you get the Chitchat games thread going? Sorry I couldn't help. I can more or less just post, that is the extent of my knowledge of using the site.
Helen12 - I hope you are ok and got sorted?
Tulip3 - welcome. I am recently dx too with secondaries to my lower spine and pelvis and waiting to start Zometa and Herceptin next week. I have found this thread invaluable. The ladies on it are so supportive, knowledgable and inspiring. I feel a bit of a fraud as so far have no symptoms, just really achy when I get up from sitting for a while. Takes me a minute or two to get going as my joints feel like I am 100 years old!
Na7asha - how are things with you?
Well I am still having my rads to primary site - only 4 to go. The radiotherapist team at The Christie are so lovely and make me laugh but can't wait not to get up really early! I am so lazy, god help me when I go back to work. I have decided to have a phased return in December just in time for the Nativity madness. My boss has been so understanding. I am going to hopefully return part time in January.
Actually felt 'normal' last night. Met my hubby in Manchester and went to watch Alan Davies. Really had a top night. Off to Scotland this weekend to see family. It is my Great Aunt's 80th birthday bash. Doing things like this does make me feel better about things.
Don't know why I am waffling! Sorry! It always seems a bit surreal communicating by sending these posts. Anyway hope you are all ok.
Katie x
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thanks for that info vercors.have been doing exercises but they don't seem to be really making a great deal of difference.
Val thanks I will speak to my gp,he is really helpful and usually prescribes what I ask for if he agrees it is appropriate.I was also considering trying aqupuncture as it has helped with pain in my neck (caused by car accident not bc).
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Hi Lucinda,
Exercise might not be enough or could even make it worse. Last time the physio had to push my pelvis back into place. He explained that as because it was not perfectly straight, I was overcompensating on one leg which got the muscles to rub against the sciatic nerve. Two days later, the pain was gone.
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Good evening ladies, I had sciatica twice and both times my physio cured it in one session. I gonto a sports physio, as I always have had good experience with them.
Val, how is your,hip?
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Linda. I have written this many times before but do not if it was to you or not..... about Sciatica. The best painkiller I have for this problem is Amitriptylene and it really really works for me. I used to suffer badly and couldn't sleep for the pain down my right leg and buttock. They do it in different strengths and I started on 10 mg then progressed to 25mg. I just take one tiny paile yellow pill with my last meds of the day before I hit the sack. Please ask your GP about it. It is a marvellous tablet. I tried stopping it after a couple of years but the pain returned again so it definitely works for me. Go on give it a go....if you haven't already that is! Love Val
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Thanks for the advice Lucinda.
I have been told by the Oncologist today to stop taking the ibandronic Acid until I see her again, & my Doc has prescribed Omeprozole. I am a bit concerned about not having treatment for another 4/5 weeks but will be glad not to have to spend part of the night sitting up to try to relieve the indigestion!!
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Broomstick lady have you tried Mia Online.I have exstensive bone mets and they quoted me £120 for both myself and my husband(he has a heart condition and diabetes) for 10 days to Lanzarote.You do have to use your European Medical Card and use the local hospital but you are covered for repatriation and either of us having to stay on in the case of a medical emergency.

So sorry to see so many leaving the forum.I only visit occassionally now and really only follow this thread as it has been a lifeline to me for the past 3 years.

Val hope you are feeling a bit better and managing to get around a bit more.Your OH seems to have been a very busy bee.I havr sciatica down both legs at the moment so have been trying to organise my oh spring cleaning the kitchen,not really a happy bunny and I think he may down marigolds.He does not mind the shopping but not so good at the housework,really need to get a cleaner again but the last one I had was not that great.

Tulip3 sorry you have had to join us.I have exstensive mets and have had pain since dx 3 years .Mostly it is bearable but have had a couple of flare ups and have had rads to affected areas which have helped.If you are taking diclofenac you should take omeprazole to protect your stomach and the indigestion. I am on letrozole and zometa, one of the se's of letrozole is joint pain so I take glucosomine and omega 3 to help with that. I have found that the se's have reduced over time.

Gentle hugs to all of you going through chemo and hope you are coping.

L xx
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Nina good luck with reducing the morphine. I have managed to avoid progressing to morphine so far,but will if ever the pain levels warrant it.Currently on gabapentin and co-codemol which keep most of the pain bearable, but would love to find something effective to treat the sciatica now going down both legs via the bottom of my back.See onc next week for my 3 monthly check so hope they can suggest something.Have had all the scans mri,ct, bone and they say nothing sinister so hoping it stays that way. I am also on letrozole.Hopefully you may get a quote nearer the date.Personally although I got a quote I decided sitting on a plane not currently an option so had had a couple of short breaks,one to the New Forest and one to the Cotswolds,and really enjoyed ourselves despite rain constantly on the Cotswolds trip.
Enjoy your holiday when you get there.

Linda xx
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Thanks Lucinda - I treid Mia (have used them before when I was 'just' primary - and they wouldn't quote for Mexico or Egypt, and would only quote 8 weeks before departure for the rest of Europe - I'll ring them again nearer the time, but don't hold out much hope right now - onc visits too frequent, and multiple drugs won't change, tho this morning I've reduced my slow release morphine to 2mg (from 6 pre rads) and touch wood - early days I know - am OK!! Next step no morphine!!
Nina
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I am sorry to read this, although I totally understand.

julie x
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This is probably not the correct place to post this, but as this thread has been a lifeline to me in the past, and is now almost the only thread I bother returning to, it seems appropriate.

I want to thank all the lovely boney ladies I have met along the way, some of them unfortunately no longer here, but lots still reassuringly and encouragingly continuing along life's path, and will endeavour to keep in touch with those I have progressed on to email and facebook with.

Which brings me to my farewell to the BCC forums.

These forums have been a large part of my life for the past 4 years, and now as I progress along my secondary route, they should be a source of comfort, support, fun and advice just as my ever increasing experience and knowledge should be available to help others. BUT, although I am not a stupid woman (I hope!), the fiasco that has been this latest incarnation of the forums has finally driven me away. Yes, I know how to trawl through and find things, but I really no longer want to have to go through all that effort. I know that lots of money and manhours have been spent to date, but I really hope someone has the guts to now shout STOP and realise that these are sunk costs, and the wisom of continuing to throw good money after bad is a very poor wisom indeed.

All we have ever wanted is a simple, fit for purpose forum - and this I am afraid is not it.

Wishing everyone hope and happiness,
Jx
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Have been chasing travel insurance for a few days now - wanted to go to Mexico for 14 days at Christmas. the only company who would quote were All clear and it was 12K!! Even europe is about 3/4K for 2 weeks. Having spoken to Insurance Choice, I've discovered some of the things which contribute to the high quotes.
I've had bone mets for over a year - good thing - less than 1 year it's worse insurance wise.
But I taken morphine - high loading for that.
Plus I've seen onc more than 3 times in last 12 months - more high loading.
Plus I take bone pills plus peachy pills = more than 1 treatment - more high loading.
Don't agree with it but it helps me understand why some of the huge differences in premium.
We're now looking at Madeira instead, and I'll trust the EH111 card even tho it doesn't cover repatriation if required.
Another 'tip' I picked up - Egypt and Tunisia come under cheaper Europe for most companies - Spain, Cyprus, Turkey are more expensive than rest of Europe.
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Hi Tulip3,

Welcome to the Breast Cancer Care discussion forums where I am sure you will get lots of good, honest support from the many informed users of this site. While you are waiting for replies I have put for you below links to some of BCC's publications you might find helpful. There's also our freefone helpline where the staff are at hand with that listening ear if you need someone away from the family to talk to. Calls are free, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2. Also, as you have been diagnosed with secondaries you might be interested in joining in our 'live chat' which runs each Tuesday evening on line, I'll also put you the link to that for you to have a look at.

http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-breast-cancer-bcc...

http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-resource-pack-bcc...

Live chat:

http://www.breastcancercare.org.uk/community/chat

I hope these help. Take care,

Jo, Facilitator

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Hi
I have just registered on the site. It was really helpful reading all your positive comments. I was diagnosed three weeks ago with breastcancer & secondary bone mets. Unfortunately I had been told the tumour was non-malignant 4 years ago & had only gone to the Doc's cos' I thought I had pulled a muscle in my side!!
I am now on Tamoxifen and Ibandronic Acid, side effects developing nicely including tiredness & bad indigestion. Did anyone else have a flare up of pain in affected area when they started to take the meds? For a few days I was taking Diclofenac, Codene & paracetomol & it wasn't touching the pain. Thankfully has eased off now.

Re holiday insurance. A lot of companies including Mia wouldn't accept me because it's less than 8 weeks since I was diagnosed. Have now managed to arrange it with Free Spirit at £421.33 for my husband & I for one week to Malta.
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Hi LyndyLoo
Just to let you know that I phoned Mia insurance on Friday for a quote on a cruise in November for 2 weeks in Europe and nearly fell off the chair when they quoted me £89! Was expecting it to be a lot more than this so was really pleased.
Am currently on Herceptin,Pamidronate and exemestane and have liver and bone mets but since finishing Docetaxol in April I have kept quite well and my last scan in June yielded good results. The lady I spoke to said the insurance is only valid 60 days from start date of holiday and a letter is required from my onc to say I am fit to travel (which shouldn't be a problem).
Needless to say, we booked the cruise after that news and knowing I have something wonderful to look forward to will certainly keep my spirits uplifted.
Hope this info helps and that you can get your holiday sorted with a quote from Mia.
Liz x
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Hi Katie2002
Not been on here for a while just reading your comments regarding my saying going for regular check-ups. I go every 3 months to see the oncolgist have done since I finished treatment February 2010. I don't get bone scans very often the only time they scan if I have pain anywhere. Example I had a lot of pain in my hand and wrist since January I happened to mention it in about June this year when I saw the oncolgist. I was sent for a bone scan. It did not show up any nasties. Eventually I was sent to see a rheumatologist turns out it was De Quervain's tenosynovitis and was given a steroid injection which helped a great deal. On a different note still struggling to get a reasonable quote for travel insurance. I tried AllClear Insurance and was quoted nearly a £1,000 which I feel is far too high. The way I look at it I work 4 days a week still managing to go swimming twice a week surely I cannot be that much of a risk for them to quote such high prices. Did try to ring Mia Insurance tonight but they close at 5. Can I ask you ladies what is a realistic quote in your eyes. I would much appreciate your help and advise on this.
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Hi ladies,
Thank you for your comments , well my pet scan results are a little more activity to my ribs and spine so am going to be given falsodex think that it is what it is called once a month and still keep on with the letrozole and zometa hmmm
Does anybody else have this combo and if so what is your experience, and why does it seem as time goes by (9months) does the side effects of letrozole seem to get worse I feel like I have broken thumbs and feet lol.
I think this site is great and would like to become more active on it, but am going to London
For 3 weeks on Tuesday so I hope to try and log on when I can but if not will when I return to Dubai.
Btw will also have my second opinion with my onc in London not that I do not trust my team here.
So ladies be as well as you can take care and thank you once again for a great site that we really do not want to be on by choice.
Big hugs to you all xxx
Amanda( AJ ) ps why do some people have pet scans and others have MRI scans??
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Hi scottishlass,

I will pass on your comments about the chit chat games still being clunky.

Sorry you are having problems starting a new thread. If you click on the subject in the left hand menu where you would like your post to appear, you should be able to see a box to start a new topic. When you click on this it takes you to a page where you have to scroll down for ages before you find the box to type your post.

Hope that works!

Very best wishes

Janet

BCC Moderator

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I WANT TO START A NEW THREAD AND DO NOT KNOW HOW TO DO IT. cAN SOMEONE POINT ME IN THE RIGHT DIRECTION?
tHERE IS A TITLE IN THE LEFT HAND COLUMN THAT READS "Chitcaht Games" and has been going on for years.
But there has been no one on them for 3 days and it used to be a relaxing way to get to know each other through word games.
I wanted to invite old users and new to look it up and join us if they would like to get to know us better.
Can someone cut and paste this or tell me how to srtart a new thread titled "Invitation to join us in word games"
I would also like BCC to take note that the games are still clunky and this part of the site is just not working as well as it could since the changeover. Such a crying shame. As it helps to unwind at the end of a hard day. val