Anyone else with liver secondaries?

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Hi Ladies

You are a busy lady this week Jacquie, I’m glad you’re happy to be back at work and good luck with the scan.

I can’t wait to hear how your ‘meet’ goes on Thurs and I hope everyone on here is well.

I saw the eye onc on Thur and was pleased to be told that 1 of the tumours had shrunk a little, so sounds like Arimidex might be working. I saw another onc on Fri after having my 2nd bone infusion. After answering her numerous questions she examined my liver, because I’d said it has been swelling more recently. I feel stupid because I can’t understand what she meant by saying it was previously 4cm and was now 2cm. Am I right in thinking that she meant the liver is only now 2cm below my ribcage and that means there has been some shrinkage? She is arranging for me to have a liver scan and chest x-ray and I am of course very anxious to find out if the hormone tabs are working. An hour after my consultation the liver was swollen and hard like a football, but hubby thought it was because it had been manhandled (womanhandled?) I have been very concerned at the daily swelling and twinges I have been getting for a couple of weeks now and am thinking it can’t be shrinking. Has anyone else experienced this. By the way, it has completely behaved itself today (up to now).

I left a message yesterday for my BCN to contact me, but she must not be working. I am going to try to get in touch with someone in the oncology dept tomorrow to see if it can be explained to me, but that doesn’t help me with another sleepless night of worrying.

Love to you all
Jen xx

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Hi Jen

Oh my goodness I feel for you, I really understand what you mean about sleepless nights.

I think you should definitely follow that through the idea to contact onc department tomorrow. I actually just did a few internet searches to see if I could find out or even get an idea, but I came up with nothing at all…total blank. Usually I can find something that gives an idea on what these doctors are up to. Really they are so used to dealing with us that sometimes I think they forget our perspective.

One thing I did come up with is you can get more wierd disturbances when you have a cancer that is shrinking.

Do you have an idea when the scan will come through? I hope is it as soon as possible . I have one next week…not looking forward to it at all. But I am looking forward to our meeting on thursday!

love to all
Cathy

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Hi Jen,
good to hear from you again, altho i’ve seen you on other threads. Great to hear about your eye tumour shrinking. Only one of them so far?
The liver stuff’s all a bit of a mystery. I remember reading somebody whose onc talked in terms of how far below the ribcage it was, so that may be what she means. What time do the BCC helpline nurses pack up - you could ask one of them?
I went for an eye test today - first one since diagnosis. I’m relieved to say there’s no sign of the shadow I was experiencing in one eye during chemo, and there’s just deterioration linked to ageing (!) and no damage from the chemo to be found. I need stronger reading glasses, but think I’ll carry on with the excellent pair i got in Primark for £2!! I just needed to put my mind at rest. She took a photo of the backs of my eyes, for future reference, which i’ve never had before.
Hope you manage a good night’s sleep Jen. Love to everyone else
Jacquie xx

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Hi Jen,

As Jacksy suggests you are more than welcome to call the BCC helpline. Unfortunately the lines are closed tonight now, but will reopen again tomorrow at 9am -5pm. (Opening times Monday to Friday 9am - 5pm, Saturdays 9am - 2pm) the freefone number is 0808 800 6000

Hope this helps.

Jo, Facilitator.

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Hi Jen

As the others have said, it is good to hear from you again and what good news too, to hear about your eye tumour shrinking. Bet you are pleased. Shame you can’t make Thursday though, as would have been nice to have you come along.

Well the day is getting closer and I am getting more nervous. Least I know what Jacquie looks like now, so will be keeping an eye out for her. If any of you other ladies want to swap emails before thursday, you need to try the other site. If you don’t know what it is, will give you clues to help if I can. The first two letters are the first letters of breast cancer and then the last four letters are another name for friends, mates etc, and was/maybe still is a dog food and begins with p. Would be good to get piccies so know what each other looks like.

I nearlty bought a new wig today too, as mine has had its day really i think, and feels loose on my head. So popped in the wig shop, with the muppets, so couldn’t have really good look around, but found another blonde bob and tried it on and it looked OK, although fringe would need cutting and thining!!! Gonna drag hubby there to have a look and see what thinks. My hair is about half an inch, but reckon I will not be brave enough to go without till at least long enough to have decent style.

Hope everyone else is doing well and having a good week so far. I am feeling bit knackered, but was here, there and everywhere yesterday, my daughters social life, god knows what it will be like when she is 15, as she is only 4 now!! LOL

Take care
Lots of Love
Very nervous Dawn
x

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Hi girls

Thanks very much for your responses, I was just about to ring the BCC helpline when my BCN rang.

It sounds like the sensations I am having are because of some activity within the liver - tumours shrinking (dying, hopefully) and of course there will be some scar tissue. As the liver is damaged, I might continue with this discomfort or be lucky for it to subside. She said I should be elated to be told the liver is now extended 2cm instead of 4cm, so yes, I feel a lot happier.

I feel much more reassured now, but dare not build my hopes too much until I have had my scan and x-ray, which she is going to chase up for me. My hubby gets annoyed with me because I always say my cup is half empty, but the more I hear from you - my cyber buddies - I promise I will try to think differently.

I hope you don’t lose too much sleep about tomorrow Dawn, it will be lovely for you all I’m sure.

Bye for now - off to get ready for a birthday lunch with OH’s aunties - nearly put my big foot in it - I was going to get her an 80th card - she’s only 73! (she must have had a long paper round).

Lots of love as usual, take care
Jen xx

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Hello All

So, are we all ready for tomorrow. Kay where are you, not heard from you in a few days, and hoping you are OK and not going to blow us out … cannot take any cancellations I’m afraid, the charges are astronomical!!! Be warned.

Jen glad you heard from the BCN, and that she has put your mind at rest etc, and you are feeling happier about things. Don’t think any of us ever stop worrying especially on the secondaries forums, but it is such good news for it, so enjoy. Enjoy your OH’s aunties birthday, i have the fun of an inside childrens play thingy after picking up from preschool!!

Take care everyone and lets catch up later to finalise any details.

Love
Dawn
xx

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I’m just being nosey,girls!! Sorry!!

I would just like to say, have a great time tomorrow - it’ll be fine once you are all there - and, please,please update us with how you did get on …

Have fun - thinking of you

Anne xx

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Anne

You are very welcome to come along if you are near enough. Sorry, can’t remember where you are from and sure you have told me.

Will def let you know how it goes … :slight_smile:

Take care
Love
Dawn
xx

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Hi Dawn and others meeting up:

have a great time tomorrow…hope there aren’t any gatecrashers from the worldwide web!

Love your cryptic other site messages Dawn.

Jane

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Hi Dawn and everyone else,

Just really wanted to echo what Jane said and don’t be scared tomorrow Dawn, I’m sure you’ll have a great time. I also did have a chuckle with your “can you guess the name” - have you been busted?!

Love,

Sally xx

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Have a great time tomorrow everyone.
I regularly meet with some others here…one meeting will lead to many more! :slight_smile:
Belinda…xx

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Hi all

So tomorrow is nearly here - definitely will be there Dawn. Am a little apprehensive but also really looking forward to meeting you all. And it’s lovely to have your good wishes, Anne, Jane & Sally - sure you don’t want to join us? We’ll definitely update you on how it’s gone.

I loved your cryptic clue as well, Dawn, and have started the registration process but don’t think it will have gone through before tomorrow.

Glad to hear you are feeling more reassured, Jen, but understandable that you want the scan result. Once you get that you can celebrate properly! And great news about your eye tumour. Hadn’t heard about this measuring of how extended the liver is below the ribs - another measurement to fret about!!

I’m still more than a little “up and down”. Got scans booked for next week and I’m terrified they might show the tumour has grown again and is now too close to the vein to be operated on. But then I’m even more terrified about the fact that this time in 2 weeks I will be in hospital, probably in the recovery room, having had the operation. No escape really. So have been keeping myself very busy at work in the hope that I won’t think too much about it. Not sure how well my plan is working.

Will check back later in case there are any last minute instructions…

Lots of love Kay

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Dawn

Ty for the invite but I’m too far away …Ellesmere Port (between Chester and Liverpool).

Know how your nerves are, mine are the same …doing a baby-site meet at Trafford Centre, Manchester in couple of weeks. So far, there are 14 of us - cant imagine finding somewhere to sit with all the prams as well…

Anyway, do have fun and I’m sorry to have hijacked this thread. (I’ll keep quiet now!!!)

Have fun!

Anne xx

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Hi All,
How nice to hear from Sixpen, Jane and Sallylou, our parallel secondaries buddies. You know you are all welcome to join us don’t you?
I really laughed at Dawn’s clues - wonder if they’ll get it?! I ought to mention it doesn’t come up if you google it, you will have to guess at a web address. Just to say it’s an ‘org’anisation, and it’s in the uk!
Jen, we will definitely tell you all about it. In fact, we’ll all post on here one at a time and tell you our first impressions of the others - when they’re not looking of course!
I’ve already got it totally wrong for Dawn - imagined her tiny and dark-haired, when she looks tall and slim and has blonde hair in the photos. Hey I’ve been wondering if my wig’s gonna last out too - getting really scraggy at the back. Just not sure it’s worth buying a new one though.
I’m pretty whacked after my early start for my 8.30 scan (asked for the ‘clear’ drink - tons better than the syrupy sludge) and 3 or 4 hours in a stuffy meeting room at work, trying to concentrate and look intelligent. Good old hubby took care of the tesco delivery and the kids’ tea so i could have a snooze. If I glaze over tomorrow it won’t be because you’re boring me…
Well, I’ll check on here first thing tomorrow before I leave, but basically - see you there!!! Can’t wait to meet you girls. It’s great, you feel like friends already even tho I’ve never met you.
See you in the morning
love jacquie xx

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Oooh, everyone else has been posting while I’ve been typing - how exciting that we’re all online right now…

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Hey ladies,

I would come too but I’m not one of the secondaries - also have Comet delivering a new tumbledryer tomorrow between the small window of 12 noon and 6 pm - dang! Have a great time!

Love,

Sally xx

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Hi All

Glad everyone ready for tomorrow - will be fun i know, but need to get the first 10 mins over I reckon. S**T!!!

Jacquie, you can google the other site if correctly guess from clues. It is 6 letters and all one word and does come up - just checked as thought was giving out wrong info. Glad you all like my clues and not been busted. Can’t really tell me off, as not mentioning the other site as such.

Sixpen, Jane and Sallylou, thanks for your comments, and as the others said, very welcome to come along.

So, meeting there at 11ish, or Ali might be later, unless she pops along for half hour before dentist visit!!! Am getting the 10am train and depends on how active I feel, might walk or grab a cab (knowing me, the cab will win!)

Kay, glad to hear from you, and cannot believe it is 2 weeks to go for your op. Had call from the Prof. office today and got my referral, so they are now in the process of getting all my scans etc together before sorting out an appointment. Am sooooo scared now, in case says its a no goer, or says it is, and then, yikes, will be having an op!!! Will have to pick your brain a little tomorrow about treatment etc, if you don’t mind.

Jacquie - loved your pics, can’t remember if sent you email to say that, as been a bit lax with the computer and so busy with the muppets. You too weren’t as I imagined as thought you would be blonde, don’t ask me why.

Well, it is now just over 14 hours before we meet - so girlies, best you get to bed early, don’t want bags under our eyes (LOL) and need to be so refreshed - yeah right like I would love a full nights sleep!!! Come on little Jack - don’t wake me up tonight!!

See ya tomorrow and thanks to the others for their wishes.

Love
Dawn
x

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Hope you all have a good time tomorrow. I guarantee your nerves will disappear within seconds! The first time I met anyone from this site (drove from Cambridge to Coventry) I nearly wheeled round in the car park and went straight home. Sooo glad I didn’t. Since then we have met in London, Cambridge, Suffolk, Manchester… and made some great friends.

Enjoy.

Jenny
x

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Hi All,
just cramming down some breakfast. My Son’s (17) been walking round the house chuckling to himself. When I asked why, he said ‘just imagine what you’ll be like - a crowd of you with chemo brain! you’ll be so dippy!’. Charming.
See y’all there! (less than 3 hours!!).
Love Jxx