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For Daisypink

77 REPLIES 77
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Re: For Daisypink

Go it Hi Matey

Yes, just read your mail this morning and mailed you back..

so your on an errands day..

take it easy and make sure you stop off at somwehere like Greggs and treat yourself to a big cream cake!

speak later

Love Jak
xxx

linros
Member

Re: For Daisypink

Jak Hi Jak

Hope you pick this post up....

I think our emails crossed last night,i was emailing you about the same time,but had difficulty getting it to send..did you get it?...also i couldnt work out how to scroll it down to check for mistakes,so i apologise if it was a bit tricky to work out!

I really need to go on some sort of basic computer course for idiots!!!

Just read your email to me....so many appointments,but a nice day out with a mate inbetween will do you good..

Ill email you again soon....off to take my daughters car for its MOT,then off to Tax it...then off to pick my other daughters mobile phone up that has ben repaired!....a running around day basically!..

Love
Julie xx

linros
Member

Re: For Daisypink

Jakki Hi Jakki

Dont know whether ill catch you before you go...if so have a lovely time,the weather is fantastic isnt it,hope it stays like this for you...we have booked our hols at last....Pathos in Cyprus,for 1st week in September....cant wait,im off to Manchester tomorrow with my eldest daughter for some holiday clothes....shes good at matching things up...so she will sort me out...

Thanks for saying i look like my daughters sister..ill tell them that,it will make them laugh!my hair is growing through quite quickly now...cant wait to get it lightened a bit though...cant go to blonde,as im so dark...

Glad you have a date sorted for your Tykerb and chemo,its not long off is it....im sure its going to be the one that sorts this horrible stinking disease out Jak...i know you have been feeling very down,and i know you have your fab friends on your other thread...but if you ever want to off load,dont hesitate to email me,and ill reply and try help all i can.....

I have my first check up since rads this Thurday...not sure what they do..hopefully give me a good examination...i will no doubt,ask lots of daft questions,that they wont be able to answer!..my mum is coming with me,but i wont be letting her come in to the room with me incase they say anything scarey,that will worry her to death...i usually take my partner,but hes had so much time off work ive told him ill be ok..

Well,i better go get the ironing board out...ill be thinking of you in Wales..itl be nice to be with your mum and sister,and i hope you get to go on the beach,if your near one and make some sand castles with your nephew...your doggy will love going in and out of the sea aswell....

Yes,we must sort something to meet up...when you get going on your treatment,if your feeling ok..we'll make arrangements...i could drive and meet you nearer your end...maybe in a nice pub or something...have some lunch...dont mind,we'll see how you feel on your chemo.

Speak to you soon
take care
Julie
xxx
xxxx.

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Re: For Daisypink

For Julie Hi Julie

I cant remember if i told you how i got on at the hospital last week (lost track of who ive emailed) with the Tykerb trial so i thought i'd let you know quickly here..

I start it on the 28th June. I have got to go and have a Muga Scan (on my heart), CT scan, blood tests and a pregnancy test as part of the criteriea for it and then if all is well.. I will get the lovely tablets along with the Capetcitibine (chemo) at the same time.

They said i'm the first person in the area to have it. Lets hope it does the trick eh?

Your photos you sent me are lovely.. the one with you and your girls.. well... you look like sisters!!!

Hope all is well with you.. your hair is coming along nicely now..

When are you back at the hospital?

I'm off to Wales today until friday - leaving hubby at home.. going with my mum, sis and Nephew and my dog too.

We will have to arrange to meet up really soon, that would be nice.

You take care

love Jak
xxxxx

linros
Member

Re: For Daisypink

Jak Hi Jakki

Thanks for letting me know...so pleased you have got on the trial...its completely understandable your feeling the way you do jakki,im sure when you go next week and they give you all the info,you will feel more reassured...i believe when your on a trial your really well looked after and closely monitered..

Hope your feeling a bit better today..

love to you
julie
xxx

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Re: For Daisypink

update on me Hi Julie

Sorry to hear your burnt from the rads. I had a square patch on my back where the rads went through from the blasts i had on my collarbone and sternum area. I hope they can give you something to ease the soreness.

I got a phone call from my onc secretary today.. i got the tykerb trial. I'm pleaed but its now left me with a whole load of other emotions - mostly fear. I know i should be grateful but i am scared of whats to come and most of all scared if it fails.

Thanks for sending me your email address on the other site, in will send over some pics to you shortly.

Let me know how that skin of your is going.. hope it heals quickly....

Speak soon, Take care

lots of love

Jakki
x

linros
Member

Re: For Daisypink

Sounds Faaaaaantastic!! Hi Jak

Wow! you sound like you have had a brill time! dead chuffed for you...that Sex and the City tour is something i am just going to have to do for sure!!...i was almost drooling reading what you did..ha!....bet its spurred you into watching the whole 6 series again hasnt it?!

Bet your wacked though,youve packed a lot in in 5 days,would love to see some photos and ill return my mug shots!!(wont be stood on carries steps though!)...a necklace from Tiffanys how lovely(you will def have to get them peggys whitened now to compliment it ha!)..

Im ok ta,had to nip to Christies today as i have a awfull radiation burn on my chestwall,and where thay have done the lymphs around my collarbone the rays or whatever they are have gone right through and ive got a big red burn just above my left shoulder blade,looks like ive been branded front and back with a iron....im wondering whether its because Christies only do 15 rads at a higher dose than other Hospitals that do more,that it burns you to a crisp!nevermind cheaper on the petrol and car parking!!

Ill pm you my email address tomorrow.
Rest up now for a few days,watching your SATC..

Love julie xx

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Re: For Daisypink

Back after a few cosmopolitans! Hi Julie

How are you? I'm back from my big apple trip and ive had fab time... it was manic and mega busy and i'm all spent out but i have loved every minute of it.

I just loved the sex and the city tour.. i got my photo taken on carrie's apartment steps, drank in scout (steve and aidens bar) , ate at one of the restaurants they used, went to jimmy choo where carrie bought hers, theres too many to mention.. you would just love it.. it was alot of fun and the tour guide was fab. It was fleet week whilst we were there - remember where the sailors are in town.... i just cant stop thinking about it!

I will have to PM you on the other site and get your email address so i can send you some pics.

Also did ground zero, broadway show, helicopter trip, horse and carriage ride in central park...

I didnt come home with any more jimmy choos.. i had spent a fortune as it was and i just didnt have the room in my case..

I got a necklace from Tiifanny & co on fifth avenue though..

So whats the latest with you?

hope your ok, i did think about you when i was on the tour...

Speak soon, take care

Love Jak
x

linros
Member

Re: For Daisypink

Have Fun Hi Jakki

Hope ive caught you before your off...Have a Fantastic time!!!im sure you wont have a problem doing that..

Enjoy all your trips you have booked,and i cant wait to hear all about your Sex and City tour....if you see Mr Big give him a big snog from me ha!

Take Care
Julie
xx

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Re: For Daisypink

going to look for mr big! Hi Julie

Just wanted to pop on and say hi and bye before i dash off to the big apple!

I will be thinking of you as i have a cosmopolitan and do my sex and the city tour!

Get yourself booked up with something to look forward to.. i want to hear all about it when i get back

lots of love

Jak
xx

linros
Member

Re: For Daisypink

Soon be Thursday! Hi Jak

Great to hear your all booked for New York,sounds like your in for a great time....Ill be thinking of you also on Friday,i may put my feet up and watch a episode of Sex and the City in your honour!!

Hope you got through the rest of your Saturday ok,its my 1 year annivesary the end of June,funny because i cant actually remember the date of diagnosis,but remember my masectomy date..i will have a look on last years calendar,it will be under breast care unit appt.!!as i was told there and then.

Still discussing date to go away at moment..but we will be looking soon..

Ive asked my daughter how to do the photo thing...ill send you some soon...shes not sure how to set up photobucket(is that right!!!)like they have on the other site,but shes going to find out...but knows how to email them,so when you get chance pm me on the other site your email address,and my ugly mush will soon appear!ha!!

I read the other day on your other thread you were having a bad day feeling angry and upset..im not surprised you feel like that sometimes...your having a tough time of it and way beyond your share of crap....hope your feeling a bit brighter now...big hug..

Take care and bi for now

Bet them Jimmy Choos are going to New York aswell!!

Julie
xxx

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Re: For Daisypink

NYC here i come! Hi Julie!

Well I booked it! I go on thursday...for 5 days.. ive booked my sex and the city tour.. thats on friday at 11am.. so i'll be thinking of you..

Got mamma mia booked on broadway, a helicopter flight etc booked too.. cant blinking wait..I still cant believe i'm going.....

Its my 2 year anniversary today of diagnosis so although this morning i was a bit teary..but ive almost certainly put it to the back of my mind now..

Hope your ok.. have you got your holiday brochures out yet?

Speak soon

Jak
xx

linros
Member

Re: For Daisypink

Jimmy Choos....here i come!! Hi Jakki

Did you get your New York holiday sorted out?....what a fantastic trip to look forward to...and a Sex and the City tour,i went completely green when i read that!!!!dont forget to take some blue tack with you,then if(more like when!) you purchase your Jimmy Choos,and put them in the overhead compartment on the plane you can stick the box down so it doesnt slide!..stress free flight home!

I think i would have to get a morgage out to replace my fillings in white....i have tons!i think when i was young my dentist used to just fill teeth for the fun of it(or the money,morelike) as my sister and i have got so many and we didnt eat sweets much...I must go though before i start getting toothache..i would love my teeth whiter...you go for it..

Cant wait to get my hair done,its just a short back and sides now,very dark....although a few grey bits have sprouted through,and im not happy!....but as my mum pointed i am 47!!!...thanks mum.Ive always been quite fussy with my hair,it used to be shoulder length and i had blonde and chestnut highlights..i like the way you had your hair on the DVD,with your fringe to the side straight,it really suited you...

Yes,we'll have to get our heads together and sort out a meet up..feel like ive known you ages,and weve never met!weird isnt it..

I will ask my daughters how i send a picture on the other site,as i have no idea whatsoever!.....and you do not have a ugly mush!...your stunning!

Going to get my lunch now..
Speak soon
Julie
xxx

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Re: For Daisypink

ha ha Julie

you make me laugh! Yes.. i do seem to be doing a lot of waiting around.. still.. got a plus point out of it.. i'm off to New york hopefully next week.. going to the travel agents tomorrow to see if i can get fixed up with something.. Ohhhhh can feel a new pair of jimmy choos coming on!!!!

I want to do the sex and the city tour you can do out there! now thats my idea of fun!

Now then.. get your sen off to the dentist and get those tutty pegs sorted.. ive been today and had to have a filling replaced.. my dentist is a private one and he had all sorts of info lying around the waiting room.. like tooth whitening.. he even had leaflets on botox! set some ideas in my head..well.. he replaced my metal filling for a lovely white one.. now i want the rest done - no botox though!.. i actually quite like going to the dentist.. think i'm a bit sick in the head!! Must be that to me it seems such a breeze compared to chemo!! I want a razzle dazzle smile now.. thats my latest project!

Got my hair done.. looks better although not as blonde as i would normally like it.. but she didnt want to use bleach with it being my first colour.. still.. its brightened it up.

you take care, we must arrange to meet up soon.. you must email me a pic of you via the other site so i can put a face to a name.. you've seen my ugly mush!

Loads a luv

jak
x

linros
Member

Re: For Daisypink

Jakki Hi Jakki

Thanks for the update...do you think there is a medal for 'waiting champion of the year'....only im thinking of entering you for it!!

I need to get to the dentist lost half a tooth on Epi and still havn't got round to going yet....all that horrid chemo and im still terrified of the dentist!

Hairdressers sounds nice...looking forward to that!want my highlights back...

Love Julie
xxx

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Re: For Daisypink

yesterday Hi Julie

Thanks for thinking of me yesterday.. hospital appt went ok.. my bloods are fine and the latest news is that they said they have applied to the trials/ethnics? (think i got that right) dept in the hospital and they have 28 days to respond to say whether me and the the other 5 ladies will get the tykerb. So i should know by the end of may.

Will have to dash off as i have a dental appt this morning and then hair dressers...

speak to you later.. hope your well..........

Love Jak
xx

linros
Member

Re: For Daisypink

Nearly Monday Hi Jakki

Just a quickie really,to say hope your hospital appointment goes well tomorrow and you get good news about the trial...there is another drug Avastin,that seems to be very effective isnt there...(forgive me if im talking rubbish,i know zilch!about drug options)...just read something that it is somtimes used if Herceptin hasnt worked..

Hope you have had a nice weekend,its rained non stop here,not hot tub weather at all!glad youve found it nice and relaxing,jakki,felt for you when you said you had more bad days than good...im sure like you said,as time goes on and you get a plan of action from the hospital,the bad days will get fewer...its still eary days since you got the news,and youve been left in limbo land waiting again......which is the pits...if only we could have a fast forward button to push,to dam well wiz things along!!

I have had plenty of chilled wine this weekend!!now have you any solutions for a bad head!!ha!

We are going to start looking at hol brochures very soon,going to try a fit it round my youngest daughter going away with her school....

Not such a quickie!

Take care and hope goes well tomoz..
Julie
xxx

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Re: For Daisypink

Its me - jimmy choo lady! Hi Julie

That heading you wrote made me laugh!

Glad your rads are over and done with.. hope your throat is improving.. ive heard nice chilled glasses of wine are the best for easing the pain! ha ha! I can understand you also feeling panic struck now your treatment is over but again.. ive heard that the wine eases that too!

Ive no news about the tykerb.. i rang up today and ive got to ask in oncology on monday when i got to see the chemo sister... so more waiting..

Ive been in my hot tub a few times.. its bliss! had some nice chilled wine whilst in there and even though its cold outside of it.. you just dont feel it once your in.. its done wonders for my aches and pains..

My macmillan nurse has been lovely too. I am still having good days and bad days.. more bad at the minute but i'm hoping that it will get better..

How are you feeling? Are you going to book a holiday to look forward to now?

I'll keep you posted about what happens monday..

Take care and love to you Ju...

Jak
x

linros
Member

Re: For Daisypink

Hi Miss Jimmy choo shoes! Couldnt resist that heading!!

How are you Jakki?....any news on you getting on the trial(before i make my banner for you,thatl ill be bringing for that sit in we'd be having!)...seriously though,i think about you alot and should imagine your emotions are all over the place...good days and bad days...you mentioned your nurse coming to see you,hope shes nice and supportive..

I dont know,all that chatter about Sex and the City,made me watch some! got nothing done yesterday..i had to smile at you fretting about your shoes on the plane,i would have been exactly the same..i bet when that plane landed you had that seat belt off like a flash and were up gathering your boxes together! was your poor hubbys ear red where you had been fretting down it for 10 hours!!!??

Ive finished my rads now,so thats it for me apart from check ups...no pills,nothing and i know it sounds good...but i feel very panic struck...im only slightly pink but have had real problems swallowing food,apparently where i had my collarbone and base of neck done,it can catch your osophegus(spelling!)...and it dam well has..im on smoothies,yogurt,creamy deserts and luke warm soup(as any heat going down is agony) nevermind...shouldnt moan..

Have you tried that Hot Tub yet??...its a very windy day here today...could do with some nice sunshine to make us feel good..

Love to you Jak
xxxx

linros
Member

Re: For Daisypink

Kim Hi Kim
Thanks for asking about me....got 3 more to go,im going a bit pink now and my arm and neck are getting a bit sore...but its nothing like chemo is it...

Hope your keeping well and enjoying this nice sunshine we're having...

Take care
julie
xx

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Re: For Daisypink

Julie Hi just wanted to pop on and say hope you are o.k. Hope the rads are going to plan and you are not to sore or feeling to tired.

Best wishes
Kimx

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Re: For Daisypink

thanks Hi Julie / Geraldine

Thanks for your posts... really helps to know that others are thinking of me.

My Onc has said that there are not many hospitals that are taking part in the Tykerb trial because of all the red tape thats involved in getting them. He did say that Christies aren't doing it so i enquired about the marsden and from what i can remember because i was in shell shock at the time , he said he was following the marsden's guidelines or something like that.. i have to say.. i do totally trust my oncologist..

Obvoiusly if you hear any different, please let me know..

Hope you are both well..

Julie.. we must arrange to meet up soon.. i'm off on holiday for a week but once i'm back we'll arrange something and..

Take care and lots of love

Jakki
xx

linros
Member

Re: For Daisypink

Jakki Jakki

Just want you to know im thinking of you...

I hope youve found your replys on the secondary site,some help, and you are gaining a little bit more strength each day to get your head round this awful news,ready for your next plan of treatment...

Im not sure when you are going on holiday,but i hope you manage to switch off a bit and enjoy it,i know it will be hard,but your with your hubby and friends that will understand and give you lots of love and support...
Eats lots of yummy food,drink whatever you fancy and get that sun on your back...

Take care
julie xxxxxx

and dont be worrying about posting back...just wanted to let you know im thinking of you...

linros
Member

Re: For Daisypink

What a shock Hi Jakki

God,i am so so sorry about your news,you must be in complete shock...ive been thinking of you since Alison messaged me..

Take it they will get you on the Tykerb trial...Jakki,i know you can do it yourself,but if theres ever anything you want me to enquire about at Christies just ask ..i know i have my moans sometimes about them but treatment wise,they are way up there with the Royal Marsden..

I can imagine how your feeling Jakki,but im sure you will become stronger soon and be ready for the next stage of treatment they have in mind...

Thanks for sending me a post,take care and we'll speak again when you ready.

Take care Jak

love julie
xx

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Re: For Daisypink

Hi

Hope you don't mind me butting in but I have been looking out for your post about your results. I have read your profife, I am so so very sorry to hear your crap news. I know there is nothing I can say but I have and will be thinking about you.

What is the plan now? Hope you don't mind me asking but have you thought about a second opinion at the Royal Marsden in Fulham, it is the leading cancer hospital in the country. They also do treatment plans which your team can follow.

Again I hope you don't mind me butting in and thinking about you lots.
Love
Geraldine45

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Re: For Daisypink

crap news eh? Hi Julie

I just wanted to say hi and thank you for your message sent via Al. Obviously it was the worst ever news i could have had.

Wont stay on long as i cant really concentrate but will be browsing the boards..

Love to you

Jakki
xx

linros
Member

Re: For Daisypink

Hi Hi Jakki

Glad to hear you had a good girlie night out,im sure having a few drinks,a laugh was what you needed,as for the tears,we all understand this happens...sometimes i feel the need to cry in the most inconvenient places! i.e over the fruit and veg at sainsburys....and we have every right with this dam fear hanging over our heads...

Im sure your hubby will understand you being a bit snappy,its not like your stressing over a ingrowing toe nail!though i think sometimes my partner thinks thats what ive got!he's so upbeat all the time,i know i prefer this to him breaking down and worrying all the time,as then you have to lift them aswell as yourself,but sometimes i could throttle him!...

My rads are coming along,it is a doddle compared to chemo,but for some reason i feel quite low when i come out,i think being in the hospital atmosphere every day is just another reminder that your quite seriously ill!i havnt any pink bits yet,but my collarbone feels a little achey..

It was a bit of a silly question me asking if you could have got to see your onc earlier,i assumed you would have asked,was just annoyed myself at you having another week to wait..

My daughter is busy scouring the net for jobs,she has never really found a job shes enjoyed since school and doesnt really know what she wants to do,she changes her mind like the weather!and now after coming to rads with me on Friday she fancys being a radiographer..we'l see!

New carpets hey,lovely....that new carpet smell is sooo nice....i could do with a new hall,strs and landing carpet,its getting a bit worn now,all the kids ive had in the house trudging up and down over the years!...dont be overdoing it moving that furniture,just delegate and instruct hubby!

Your sore ribs may be rads,chemo build up or anxiety,youve had a hell of a lot of that Taxotere,i still have aches and pains and that penguin walk is still part of my morning routine...i do hope everything is ok for you Jakki...i wont be online tomorrow,so im sending you my love for Monday and i will have my fingers and toes well and truly crossed for you.....

Love Julie
xxxx

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Re: For Daisypink

Hi Hi Julie

Thanks for thinking of me.. had a long week.. thankfully on monday, I was able to go out with the girls from this site.. we went out for a chinese and had a few too many glasses of wine... we managed to take some really funny photos, film a video to send over to one of the other girls in Canada (Karen) and despite a few tears, we had an absolute cracking night out.

Tuesday and wednesday seemed to drag for me with me being very snappy at my poor hubby, but the last 2 days have wizzed by as ive been busy having my Herceptin today and then we have had to move all the furniture in the house as we are having new carpets fitted throughout tomorrow, so it will be a busy one this weekend putting it all back in place, a blessing in disguise to take my mind off the wait until monday.. although I hate having my house upside down!

I did try and get an earlier appt with my onc, but he couldnt fit me in as his clinic is so busy.

How is your radio? You said you were tired.. thats to be expected and also you are still recovering from the chemo too.. dont forget that.. I found I had to have little cat naps in the afternoon after mine.

Hope your not going red already.. remember to slap on the aqueous cream! Its too nice to be sitting in hospitals when the weather has been this nice isnt it?

How's your Daughter? has she been looking for a new job?

The pains i'm having are in my ribs mainly.. i've had them since my op really, but they have got worse.. they kept putting it down to the rads and taxotere and i had a bone scan in july last year and nothing showed up then. Ive definately noticed its worse though, feels like they are sore and tender, they ache and feel like something is continuely pressing on them.

I'd love to meet up at the Trafford centre with you along with Kim.. maybe some of the others might want to come too.. the more the merrier. I'll get this appt out of the way first, get my head sorted, then on holiday for a week, after that we'll get something arranged.. be lovely to meet....

Take care and thanks for thinking about me..

keep you posted on it how goes on monday...

fingers and toes crossed for me please....

Love Jakki
xx

linros
Member

Re: For Daisypink

Hi Kim Hi

Thanks for your post...

Would be lovely to meet you both,i started my rads on Tuesday,felt a little tired after todays session,think its just being in the hospital everyday its a bit draining isnt it..

You also have a good weekend.

Julie
xx

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Re: For Daisypink

For Julie Hi, not sure if you have started the rads yet but wanted to say hope it all goes o.k.
If and when Jakki wants someone to travel up to the Trafford centre I'd be happy to come too.
Have a good weekend
Kimx

linros
Member

Re: For Daisypink

Hi Jakki Hi Jakki,

Just wanted you to know,ive been thinking of you...i hope your getting through the week ok ...and have managed to do some nice things to keep your mind somewhat occupied..

Julie
xx

linros
Member

Re: For Daisypink

Hi Jakki Jakki

I really really hope it isnt bad news,sometimes we think the worst and that isnt always the case,but i know you must be feeling dreadfull...and another wait till Monday,its almost breakdown material...could they not squeeze you in any earlier?

I read your other post this morning,and was ready to reply then got waylaid with my eldest daughter coming home in floods of tears having packed her job in because she hates it...i was fuming as she loves the good wage shes on and practically buys a new wardrobe of clothes every weekend so god knows how she will cope,she better not start moaning to me....i have other things on my mind and ill flip!

Lovely to suggest meeting at Trafford Centre(ive spent a fair bit of money there)!whenever you can, that would be great,theres some lovely eating places there...But the main thing at the moment is you getting yourself sorted...you mentioned pains in one of your posts...i know you'l be worried but as you said anxiety can give you horrendous pains all over the place..

Jakki,thanks for letting me know,will be thinking of you this week..

ps. rads a doddle like you said,worst bit scrubbing those felt tips marks off...was red raw after!

Julie
xx

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Re: For Daisypink

For julie Hi ya Julie

Just thought i'd let you know that my oncs secretary rang me yesterday - ive got to go and see him on monday afternoon..

Obviously i'm expecting the worst..... i so hoped i wouldnt be seeing him so soon..

Hope the radio is going well for you..

I'll keep you posted

Jak
x

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Re: For Daisypink

Thanks Thanks Julie

Yes, the wait is getting to me now.. just want to know whats happening with me.

Rang up yesterday, they said they would call me back, they didnt, this worries me now as the way i see it, if its bad news they wont tell me over the phone. They did say my onc been away for a week and has a lot to catch up on. I'm hoping to get a letter this week to let me know whats happening.. lts hope it just says he'll see me in 3 months!

I will keep you posted though..

Good luck for your planning on monday 16th, its a doddle so dont worry, just lots of lying still while they use your body as a drawing board. Oh and then the lovely tattoos! Ive got 3 of em..dont worry about them though as you can hardly see them.. once thats all done your rads will be soon be over and done with!

Speak to you later on this week (i hope)

Enjoy the sunshine in your conservatory

Love Jakki
xx

linros
Member

Re: For Daisypink

Results Hi Jakki

just a quickie...ive just read your post on the other site,and want you to know ive been thinking of you going through the horrible waiting period.....i soooo wish you all the best for your results...

Keep me posted
julie
xx

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Re: For Daisypink

Hi Penguins! Julie great news with your biopsy results. I imagine you will be wanting to get on with the rads now.
I don't think examining yourself too often does your nerves any good. I used to be poking and prodding constantly and was not only making myself sore but worrying myself sick because I always managed to find something. It's true that a history of lobular b.c. puts you at higher risk of b.c. in the other breast different figures are quoted depending on where you read and who you ask. Anything from 20 - 30% risk. I understood that to be a risk of a new primary in the breast not recurrance but I'm going to clarify that with my onc. next appointment. From what I have learned lobular follows a very different pattern to ductal when it comes to reccurance and I do wonder how much knowledge of lobular especially in pre-menopausal my consultants have.
Anyway that's me on my lobular soap box again!!
Enjoy the garden julie but don't try to do too much listen to your body. This advice comes from someone who's far too lazy ( Jakki will vouch for this)!
Which reminds me Jakki I have succesfully registered for the race for life - which is a bit of a worry.
Hey maybe we can all do the penguin waddle!

Take care
Kimx

linros
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Re: For Daisypink

The Penguin Walk!! Loved that excellent description,made me laugh!!...

I now have a picture in my head that there is at least 2 of us,waddling around penguin like!

My god,a sense of humour,you need for this dam disease dont you...i read a post a while back off a lady describing the awfull hair loss,etc etc symptons of chemo,and she then added....thank god our teeth dont fall out!!!made me giggle on and off for 2 days!!

chin up,enjoy your wine
julie
xx

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So pleased for you! Hi Julie

Thanks for thinking about me..Brilliant news about the clear nodes!!!! Make sure you have that double brandy tonight to celebrate!!

I still ache, infact i mentioned it to my onc on monday, he said it was more than likely the taxotere - he said is was the most toxic of chemos so i can expect to suffer the effects for probably years.. along with the forced post menopausal symptoms brought on by the chemo, tamoxifen, arimidex and zoladex and he said herceptin causes the aches too - thats me up the swanny!! You are not alone with feeling awful in the mornings. I always feel like ive done 10 rounds with mike tyson, aching, very stiff, my ankles and heels are the worst too - i have perfected the walk of a penguin!!!! It gets better when i move about, but when ive sat for a while, its just the same.. almost as if i need oiling!!

Its a good question of whether the nodes are now cancerous, when they ultrasounded them, they compared them to the first ultrasounds done on the ones that were removed so i'm guessing they compared them to how they looked and they way i described how they felt. I will ask my onc if its possible that they could be now be clear.. never thought about that or even if they would now biopsy these ones to see if there are any remaining cancerous cells in them.

I had a mammogram because i was due one, i havent had one since May 2005. I have to say, i do check my other breast, not so as often as i used to, Kim (staffy) who chats also on here had lobular bc and i think i can remember her telling me that its more likely to recur with lobular bc - correct us if we are wrong kim !

Great that you got your planning date through, how many sessions of rads do you have to have?

Well, going to get on and start the tea, might have a nice glass of wine whilst i'm cooking it.. i think being drunk for 2 weeks might just pickle my liver so had better not try that one but i'm sure a glass or two wont hurt.. relax me anyway and take the anxiety away of the next 2 weeks!!

I will certainly keep you posted...

Love

Jakki
xx

linros
Member

Re: For Daisypink

Hi Jakki Thanks for letting me know how you got on...bet you were drained when you got home...

Things are looking good though Jakki if your onc thinks your nodes are shrinking or stable,have you ever mentioned the possibilitly of them being clear and just not shrunk?afterall they havent done a core biopsy on them have they? so how can it be 100% certain they are cancerous.

That 2 week wait is the pits,youll have to keep busy if poss,not that that helps an awfull lot,its just means your busy and worrying and tired because youve been busy!!lol.

I went for my radiotherapy consultation yesterday,got the appointment through the post on saturday morning,i had rang my breast nurse about it on thursday...seems i had jogged there memory!anyway i have my planning session on the 16th april(2 weeks again)!! then i should start my sessions within 2 days of that...ive also got to have a ultrasound on my collarbone area and that needs to be done before rads,so they better get their fingers out on that one...and last but not least got my result for my biopsy,it was clear and again the rads consultant said it had just stayed enlarged from the chemo...

Why have you had a mammogram? is that just a routine check,to be honest ive not even been feeling for lumps on my other breast,im just to scared to and couldnt cope with anything going wrong there.The surgeon did say it was very unlikely to get a recurrence on the other breast and not to worry checking all the time,apparantely invasive ductal rarely come back in that way...its lobular thats a higher risk..

Your becoming a bit of a expert on the node front!i saw someone of the other section asking your advice,i was going to post myself but had nothing to add as you covered everything..

We have had some nice weather but today has gone cold and miserable again,not sat much yet in my conservatory,as i thought id better get on with some gardening...only did a hour and had to come in exhausted!!im still acheing like mad are you?? i mentioned it to my breast nurse also as when i get up in the morning i feel awful,aches and pains and my ankles crack,i hobble around for ages till i get going!...she said it would be shear fatigue from the chemo along side being menopausal and she would only be worried if i still felt the same in a years time!!

Anyway Jakki,im waffling...ill be thinking of you having your ct scan tomorrow,and all i can say is i hope you can find a way of not worrying too much and enjoying your weekend...going back to them double brandys! do you think the answer could be to just get drunk everyday for 2 weeks!!??would it do any harm to our livers!?!

Take Care
Let me know if you here anything wont you..
Julie
xx

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Hi Julie/Linros Hi Julie

Hope you are well and are enjoying that conservatory of yours.. we've had some nice weather havent we?

Had a long day at the hospital on monday, had my mammogram and they decided to do an ultrasound too. I will get my results through in a couple of weeks.

I also had my bone scan too on monday, along with an oncology appt.

My Onc seems optomistic about my results as he said the nodes on my neck are no worse, infact he thought they were slightly smaller. He thinks that the herceptin, along with the zoladex and arimidex is keeping the cancer in check but of course until i get my scan results he cant be sure. He said he would see me in 3 months unless he had anything to "discuss" with me after my scans.. so fingers crossed theres nothing to "discuss". He did say he would write to me and tell me if they were clear so i was not left wondering.. so i just have my CT scan on friday to do.. the results are taking about 2 weeks on those too.

Have you any results yet on the node biopsy? any dates through for your radiotherapy?

keep me posted... and take care

Love Jak
xx

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Hi Julie I don't talk to my boys about the possibility of a reccurance. I'm sure they know anyway without having to spell it out. I just hope we never have to have that conversation with them. I didn't even tell them I was having a mastectomy I told them I had 2 lumps that were cancer I was having them removed and a little plastic surgery to fill the gap that would be left which was basically the truth. By having the immediate reconstruction I got away with it. Although I think it took them by surprise how big an op it was and how long it took me to recover from it. Mind it surprised me too.
My eldest son was going on his first holiday with friends the day I was diagnosed so we did'nt tell him (my decision) or I don't think he would of gone. The downside to that was i was in hospital when he got home and my husband had to break the news to him. You have to do what you think best don't you?
I have difficulty in planning things more than a couple of months ahead now so I know what you mean when thinking about your daughters holiday but hse will go and she will have a great time and you will worry about her the whole time she's away!!

I can imagine it will be a worry not to have any Tamoxifen etc. I have read somewhere that hormone negative cancers are less likely to recur after 5 years than hormone positive cancers. Thought you would also like to hear I know a lady who was diagnosed with hormone negative b.c she was about 44 when diagnosed 6 years ago with a grade 3 and she's doing great.

Take care
Kimx

linros
Member

Re: For Daisypink

Jakki Hi Jakki

Just a quickie to say hope your scan goes ok tomorrow,i know you have lots of other bits and bobs to be done at hospital also,talk about a day out....bet you wish its was else where!!

will be thinking of you
julie xx

linros
Member

Re: For Daisypink

Jak Hi Jakki

Hope you enjoyed your wine and remote,and you put those weary legs up!!

Ive sent off for that dvd,so looking forward to that.

I wasnt offered a general anaesthetic for my op or i probably would have had one..im due to have the stiches out tomorrow,but its still very sore to touch so im not sure whether there ready to come out..

So now im waiting for my ultrasound,results from the node biopsy and last must not least my radiotherapy!!...i would love to meet you at Christies,dont think i could get on the look good feel better day now,its prob all booked up..but i maybe having my radiotherapy so poss could be there anyway...let me know the date and even if im not there,i could bob up and say hello,its only 20mins from where i live..

Oh and thanks for your mention of me on your Karen and Co thread i will get round to crashing in on it soon...(then you'l be sorry,when you cant shut me up.lol)!

Anyway im off now going to but a new rug for my conservatory,ive been painting in there and buying a few bits and bobs for it and its lacking a nice rug,its my favourite room now..its going to be my little hideaway,where i can light my scented candles and try!!and have nice thoughts...

Enjoy your day
Bi for now
Julie xx

linros
Member

Re: For Daisypink

Kim Hi Kim

Thanks for your reply,

I can understand the worry never going away entirely..but look forward to it fadeing a little.. you must have been very anxious over your stomach pains,even the gallstones doesnt sound pleasant you must have been relieved..

My daughters are 19 and 15,and have coped very well..my eldest was terrified and cried buckets when i told her my diagnosis,the younger one just asked if i was going to get better,and when i said yes...she accepted that and has not asked very much since...i make it my top priority to protect my girls from worrying about me,sometimes i feel i should talk to them about how unpredictable breast cancer is and that i am high risk for a reccurence,but i just cant seem to do it..i think i will deal with it if it happens!!
It must have been a difficult time for you and your family when your son went to uni,but you have to let life take its normal course dont you..my eldest daughter booked her first holiday with her friends at the beginning of the year for 2 wks in August and i remember thinking..god i hope im still well then or she wont go...its a awful disease it hits you hard and the uncertainity about the future is a nightmare...hope your son does well and doesnt get to stressed about his gcse's,my daughter is in the year below and starting all her course work..

July will be my 1st year anniversary of breast cancer..when i finish all my treatment i cant have any drugs as im negative to all hormone receptors,its just a fingers crossed situation....ooooohh so scary,the first 2 years are the highest risk for recurrence then it starts to drop...so already im wishing 2 years of my life to rush through quickly..how crazy is that!!!....look forward to your 3 years its not long off..

Lovely to chat with you
bi for now
Julie xx

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julie & kim What a lovely little thread we have got going here.. nice to chat to others and get to know each other.. makes this crap bc journey so much easier eh?

Kim - I never bore of you luv, dont you be saying stuff like that.. always happy to hear about how you feel, you always seem to listen to my moans about my hiccups!!

Julie - local eh? You were very brave.. my surgeon gave me a local and a general for the node op.. guess he couldnt cope with a gibbering wreck that i am!! I forgot to mention.. i am coming to christies in may for a look good feel better day with another one on the girls on here, i'll let you know the exact date, maybe you could join in, be lovely to meet?

well, best go, got a nice chilled glass of wine waiting for me.. robs out tonight with the lads and i'm relishing the thought of the remote to my self!!

Take care and love to all

Jak
xxxx

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Julie Hi, Know what you mean about all the staff in theatre during a local. I had my port from the reconstruction removed this way and i was surprised to see how many staff were working alongside the surgeon. I also thought at the time how it must have been during the 'big surgery'.

Yes it's been nearly 3 years for me now although for some reason I keep thinking of it as 2 and a half something inside just says don't push your luck I suppose.

I think Julie as time goes by the worry doesn't lessen much (not for me yet anyway) but I guess I'm learning to live with the worry and it doesn't now take over my life like it used to. This is probably because I have been fortunate not to have had any major hiccups. The worst scare I went through was having pains in my upper abdomen. I had a liver ultrasound and as you well know the waiting is awful. I was fortunate to be reassured by the radioligist at the time of the scan. Gallstones were what was causing the problem although I had to wait to long to have it confirmed there didn't seem to be anything else going on in there. My surgeon offered to remove my gall bladder but i have decided to see how it goes. The pains haven't been too bad and I am reluctant to have surgery unless it's absolutly neccesary. I have been tired and lethargic over the last few months also my moods been a bit low so again I was a bit concerned that the cancer may be back but blood tests show I have an under-active tyroid which is now being treated.
( If Jakki's reading this she'll be bored she's heard it all before)!
It's difficult to keep things in perspective after a cancer diagnosis it's easy to forget we can still get all the common ailments that are nothing to do with b.c. I have been reassured by the doctors time and again that this is normal but I was never a hypocondriac before b.c. and I don't want to be one now but I suspect I'm a little guilty of that these days.

Actually I only have one teenager now (should update my profile) my eldest son will be 21 this year and 'should' be graduating from uni. This time has gone very quick. He went away to uni. after my surgery but before I started chemo. It was a very emotional time as he had some health problems himself in the months previous to my diagnosis.
My youngest son who was 13 when I was diagnosed is now 16 and getting ready to sit his gcse's. I have to say I am so proud of them. They dealt with it all fairly matter of factly and don't fuss over me too much which is exactly how I wanted it to be.
How have your children coped Julie? I hope they are dealing with it ok. They are the first ones you worry about aren't they? They are always your babies.

Best wishes
speak soon
Kimx

linros
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Re: For Daisypink

Easy Op...compared to last 1!! Hi Kim

Thanks for your reply

I only had a local anaeshetic,so it was a doddle realy,infact the build up of haing to get ready for the op and walking into the theatre was the worst bit,i had a doctor doing the op and 3 surgical nurses stood round me! incision was only a inch long...god know, how many they have in when there doing major ops!

Reading your profile i see your nearly 3 years post diagnosis...i love reading profiles like that!!!hope you have kept well since and not had any hiccups...does the worry get easier with time??..

I also see you have teenagers...what joy they bring!!......sometimes!

Take care and thanks again for you msg..
Bi for now
Julie
xx

linros
Member

Re: For Daisypink

Its all Waiting! Hi Jakki

Thanks for your reply,

I took the dressing off yesterday,its only 3 stiches,but im having to go bra-less at the mo.as the cut it right where my bra strap goes..ouch!so im all lobsided and wearing baggy jumpers!!..

Im going to send off for that DVD,and have a nosy at you!ha...mind you ive seen your piccy on the other site,you look a stunner!!..do hope i cant miss the day,if my rads come through ill have to think of a good excuse not to make it,as ive been nagging a bit for it to hurry up...feel like theyv forgotton me!!

I too have aches and pains in my back,legs,ankles,fingers and wrist!,i feel like im 100years old when i get out of bed,then it eases a little,but by 6 at night there back...i mentioned it at my last onc.meeting,and was told it would either be the Taxotere,as it has long lasting effects,or because ive gone on the menopause(having hot flushes galore).So may be the same with you...or the Arimidex as they are all menopausal inducing drugs arnt they?not well up on them as i cant have any...i remember the onc.telling me i was negative to everything,and i felt like saying "your alright mate,im feeling rather negative at the moment"!!....so try not to let your mind wander too much.
As for appetite,sounds like its probably that drug also,if its one of the side affects.Could do with losing mine a bit,ive put a stone on during chemo!mind you,was only skinny to start with and everyones saying i look better,but its no joke when you cant do any jeans up!!

Anyway Jak,ill be thinking of you on Monday and Friday having your scans...not that there the problems its the dreaded waiting!!!its a wonder we dont all have grey hair when it grows back!

Take care and rest those weary bones..

Bi for now
Julie xx

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So pleased that's out of the way. Hi Julie, didn't really expect to see you posting tonight. Will be keeping my fingers crossed for that benign result.
I've always wondered who on earth designed those hospital gowns!
Good luck for the ultrasound results.

Best wishes
Kimx

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Ohh - those gowns!! Hi Julie

Great that the pesky node has now been evicted!!! I would of loved to see what mine was like!! I hope the next 2 weeks pass quickly for you and bring good results..

I went to a healthy living day run by BCC last october, i thought it was very good, loved the reflexology, wasnt sure about the reiki though.. I am in the new DVD that BCC have produced - eating well - being active, there is a part of it which highlights the HLD's run by BCC and I am the one having the reiki on it... you can order a free copy on line.. he he!!

Anyway, i am sure you will enjoy it as much as i did.. you can always ask them to skip thats days rads if it comes through as i skipped a day or two of mine whilst i had chemo.. worth asking..

My bone scan is the 26th and my ct scan is the 30th, so you remembered right.. dont know if the Taxotere is still having effects on me or its the cold weather but ive had major bone pain in my legs and pelvis these last few days.. pains are like they were on Taxotere.. oh well.. i suppose all will be revealed next week..

My appetite is very poor, I will have to mention this to my onc next week as its worrying me now that i am not getting the nutrients that i should be.. I read the info leaflet with my arimidex today and it says one of the side effects is loss of appetite so i guess it must be down to that..

Rest up now after your op, you'll be suprised how the anaesthetic can catch up with you..

Keep me posted and do join in with us girls.. you fit in with us already.....

Love

Jak
xxxxx