Hi Carolina,
So sorry to hear your news - what a shock for you, when you seemed to be so fit and well. It must be awful having to start all over again, esp moving on to the dreaded chemo when you avoided it before. I was diagnosed last March with primary and secondary bc in my liver, so had chemo (8 months of it!) and now just getting back to some sort of normality. Lots of us here are getting on with life with liver mets, so keep in touch and let us know if we can help you with anything, and keep us informed of your treatment and progress, won’t you?
We have a meet up planned on 24th April, and you’d be most welcome to come and join us if you can get to London.
All the best
Jacquie x
I would love to join you but I am rather far away, in Dubai to be exact! I am seeing my oncologist tomorrow and he will have the results of the final round of tests- core biopsy and bone study. Praying for a miracle but have the wigs on hold in the shop.
Thank you for your encouragement. It is so much help and much appreciated.
Thanks girls,
Love,
Ann
Dubai eh? Well, we’ll just have to be cyberbuddies then (or until we can save up enough to do a meet near you…).
I’ll be thinking of you tomorrow. Hope you get good doctors in Dubai. You just wonder how you’ll manage to keep breathing, don’t you, it’s so scary? Let us know how you get on, and lets hope it’s surprisingly good news.
Jacquie x
The biopsy revealed it is definitely breast cancer spread. Surprising how ones goal posts of hope change. Now I think it could have been worse like primary liver and am thankful it is not… So, liver mets and a couple of small lesions in the lungs.
I had my first chemo yesterday, it took 8 hours as it was my first. I was a bit emotional on arrival at the hospital, my bravery had just got left behind in the car park!. The nurses were lovely and let me talk it out ,with several Kleenex used ,before we started. I was lucky too that my lovely husband was there for the whole time.
I am on Herceptin,Cytoxan and Taxotere. I do not feel too bad, will play it by ear and see how I go in a few days. I know we are all different. The worst thing is the pain from my poor enlarged liver which goes into my ribs and back. I never ever thought I would feel pregnant again but this week with my huge tummy (have gained 10lbs in 3 weeks from fluids) and constant nausea it was just like old times! Think I’ll have a day in PJ’s as nothing else fits! I don’t like the chemical smell seeping out of my skin. A shower and gorgeous body lotion hasn’t got rid of it. Still, I feel better than I thought I would and I am glad I am on the road and the fight has begun.
Love,
Ann
Hi Ann,
I am so sorry to hear it was not the news you hoped for. Even though it sounds like you had prepared yourself quite well for the possibility of liver mets, it’s still a big thing to come to terms with. I’m glad you’ve got started on the chemo already - that tends to make things feel better, as you feel you’re ‘doing’ something about it. Is your Onc nice? Sounds like the nurses were lovely and gave you time.
I would imagine your tummy will go down fairly quickly? I don’t know.
How often do you have to go for your chemo?
I’ve been for my CT scan this morning, to see if the Tamoxifen and Herceptin are working on my liver met. Only 10 days to wait for the results! I’ve also just started going out without my wig - a huge thing for me. Quite as bad as wearing the wig in the first place. So I’m feeling alternately vulnerable and weedy, and angry and kick-ass! (woe betide anyone who stares!). I’ve dyed it a rather wild shade of coppery purple, so it has to be worn with attitude.
How old are you and do you have any children? I’m in my forties and got 3 kids aged 9-17. Two of them are doing A-levels and GCSE’s this year, so high tension around here. My daughter’s doing her Art exam today.
Well, let us know how you get on with your treatment and if your symptoms start to get better,
love Jacquie
Hello Ann
Sorry you had to join this thread, I saw your post earlier and had hoped for you there would be better news. I hope that you can get your symptoms under control quickly. allie who posts on here had similar symptoms and they went away very quickly as she went through the chemo.
I have just done 6 taxotere and had a very good result from it - oncologist thinks that taxotere is great and is the drug of choice for liver secondaries - what is cytoxan? curious I am off to google it The nurses are lovely arent they - they are so professional they know exactly how to let you let out your anger and sadness, I have never minded seeing chemo nurses - scan people- different story!!
Jacquie how are you doing? coppery purple sounds great, I think it will really suit you. I have got this on my list of things to do - have a hair colouring, even if I wimp out and just have a wash out colour,
We have just come back from holiday- have been in Barcelona and blown the budget on eating out in spanish resturaunts and sightseeing. Its a really interesting place and I managed lots and lots of marching about. Best part was taking a cable car up to the fort, having this illness certianly removes your fear of hights,
Hope everyone is OK. Allie do check in on how you are with xeloda.
love
cathy
Hi Cathy,
Good to hear from you. It’s got a bit sparse on here with everyone gallavanting arould the world on their mega-hols!
We have booked to go to Barcelona in June. We’re staying on the coast nearby but Barcelona’s definitely going to be one of the highlights. Please tell me what we should see while we’re there.
I’m feeling better about my hair - I’ve had lots of positive feeedback from people in the last few days. Going into work tomorrow will be the final hurdle…
Looking forward to seeing you and all the girls very soon, for a proper catch up
love Jacquie x
Hi all
Back from my cruise and feeling much better for having been away. Weather was warm but rainy at times - sea quite rough also (in fact the world is still going up and down a bit - not quite found my land legs again!). But discovered I definitely don’t get sea sick which is good. Eaten far too much as the food was really good and available ALL the time. Did more sightseeing than I thought we would and was really pleased that I managed quite a lot of walking around. Best bit (like you Cathy) was going up in the cable car on Madeira - views were fantastic.
So…back to reality now though still have another week off before the school term restarts when I’ll have to pick up my job again properly.
Glad you had a good time in Barcelona, Cathy. I’ve never been though David has on business and has always said he’d like us to go together. I’ve definitely got it on my list of places to visit which seems to be getting longer and longer.
Sorry you have had to join this “not-so-little” group of ladies with liver mets, Ann. I have been lucky and (so far at least) been pretty symptomless with my liver mets. As Cathy has said, though, Allie had similar problems to you initially with fluid etc. Hopefully she will post soon and let you know how quickly they resolved with the chemo (Allie - how are you doing? Are you tolerating the xeloda any better? And any news about the blood clot? Hope you are ok)
Hair sounds great Jacquie. Going wigless is scary though isn’t it? And I still look in the mirror and do a “double take”, partly because I am wearing my glasses as well as the shorter hair. Seem to have turned into my mother over the last 9 months!! Don’t envy you the exam tension. I think we had something like 8 consecutive years with one or other of the children doing major exams. It definitely gets easier when they are off at uni - you just have to murmur reassuring things down the phone to them every now and then!! The youngest one is doing her finals this year and then that will be that - apart from maybe professional exams - but she is pretty organised (just needs the odd cup of coffee and supply of chocolate when she’s at home working!).
Also really looking forward to catching up properly with you all very soon. Got my Guildford “meet” first though - tomorrow with about 12 of us I think.
Love Kay x
Hey Guess What
I AM BACK - oh no I hear you all shout!!!
Got back yesterday lunchtime (flight delayed by about 2 hours 30 mins), but luckily Jack and Sophie slept ALL the way, had to wake Sophie for a wee before landing and Jack when landed, neither wanted to wake up.
We had a FANTASTIC time. Weather was lovely, only rained last Saturday all afternoon ( and I mean RAIN), and then a couple of evenings of rain. But apart from that sunny most of time with some cloud, and last 3 days in the 90s!!! But apparently today, and thro til Wednesday temps were dropping to 67 and then 72!!!
Did not wanna come home though and wished we had gone for 3 weeks now though. We all had a blast though, even Jack, although was ill for first 4 days with eye infection and ear infection. Couldn’t even open his eyes on the Tuesday morning, which was scary, so went off to a walk in clinic and lucky we did, as was told he had start of ear infection, so came away with antibiotics and eye drops!!! But he was an angel bless and Sophie was too, although she had her moments!!!
Will sort out more pics for you all and send when get a chance.
So how is everyone. Kay glad you had a good holiday, and hope todays meet was good fun. Have to fill us in.
Allie, how are you. I had a quick flick through and not seen much from you on here. BUT YOU HAVE ALL BEEN VERY QUIET WHILE I WAS AWAY! LOL
Cathy sounds like you had fun in Barcelona too - not sure if I sent my pics to you - thought I had, but got funny feeling I forgot - I do apologies, can you forgive me if I did!!!
Jacquie good luck with the results and hopefully you will get some good news.
Hope everyone else on this thread is doing Ok - and sorry for not mentioning you all. Just wanted to let you know I am home and although had no rest days on holiday, and I walked miles I reckon, did really well and feel great. Was a little worried going on some of the more dangerous rides like The Hulk, Everest Mountain, Kracken to name a few as these are G-Force, upside down, sideways, backwards and superfast and thought might not do me any good, but in the end thought, f*** It and went for it.
Anyway, little man just woken up so better go.
Catch up with you all later on I hope. Take care
Lots of Love
Dawn
xxx
Welcome back Dawn! Glad you had a really brilliant time, though to be honest I couldn’t see how you couldn’t with Sophie and Jack there to soak it all up! The pictures were lovely - thanks for sending them - expect to see more though when we get together next week. Shame about Jack being ill though but really good news that you were obviously able to keep up with them all - not sure I fancy some of those rides though!
Had a really good meet in Guildford today - 12 of us. Dawn took some pics on her camera and is putting them on the other site if you want to put some faces to names.
Jacquie - forgot to ask yesterday when you get your scan results. Do they ring with them or do you have an appt with the onc? Fingers crossed.
And Allie, really hope you are ok - trust you are just too busy dashing around the country in that new car of yours.
Must go and do something about dinner.
Lots of love
Kay
Hello all
Dawn glad you had a great time in florida, was looking out for this, its a great place and seems to get better over years…
These trips really are great things as you get away from everything and have a good time with the family. Glad you all survived flight and the kids were ok. its great when they sleep through the flight back and save you stress of entertaining them.
jacquie- pleased you are going to Barcelona, I think you will like it, we thought it was great,I will bring you a copy of our itnierary (my husband writes everything down in detailed itinerary before we leave) so no what shall we do today , it is a useful reference for opening hours etc., on the dowside schedule can take you over…you will laugh when you see it!
Kay, I wish that i could have made guidlford meet, would have liked that but i have been on my first business trip since being diagnosed with secondaries,just got back from frankfurt, got on really well despite occasional feelings of why am I doing this?!
love
Cathy
Hello you lovelies,
It’s great to have you back Kay and Dawn, it was very quiet without you!!
Brilliant the kids slept on the flight, and that all of you were well after the first few days, Dawn. And you seem to have done pretty well with the stamina Kay.
I’m envious of your meet Kay - I wanted to come, but decided it was a bit too far (and a work day).
Cathy, your husband’s itinerary sounds hilarious, but also a brilliant idea. I have to confess to doing quite a lot of research before holidays myself, but i don’t organise a schedule, just take all the info with me if I remember! I’d like to see it. Well done you for surviving the Frankfurt trip. I imagine it was a bit of a confidence hurdle actually, going for the first time post-secondaries.
I hope Allie’s OK - she’s gone very quiet.
Maddison - so sorry to hear your news. What a blow.
I’ve got a bit of a dilemma - My bro-in-law’s father has died and the funeral’s on…you guessed it… next Thursday. It’s in Southampton. I just don’t know what to do. I didn’t know him that well at all, but would like to be there to support my Sis, her Hubby and my 2 nieces. On the other hand I’ve been soooo looking forward to seeing you all, I can’t bear to miss it. I suppose i will see some/all of you at the South Bank meet in May…? I don’t think they were expecting me to go. Just don’t know what to do for the best.
I’ll get my scan results in clinic on Monday. I feel OK at the moment, but did have a weird dream about tubes coming out of my boobs and lungs, last night. I expect I’ll get more twitchy as the day draws near.
Well, I’d better go and get my beauty sleep. Although someone told me I look so young with my new haircut that I look about 16!!!
Love to you all
Jacquie xx
jacquie
a quick one as I am at work
oh dear, thursday, what can I say, life has a way of throwing these things at you. you do whatever you think is best for you and your family,
I am keeping my fingers crossed for you on monday…
love
Cathy
Oh Jacquie
As Cathy says, you must do what you feel is best for you and what you are most comfortable with. We will obviously really miss you on Thursday if you decide you need to be in Southampton but we can always arrange another meet soon, and some people will be at the meet on May 6th (don’t think I can make that one now as will need to work that day).
Will join Cathy in crossing my fingers for you on Monday.
Lots of love
Kay x
Thanks Cathy and Kay,
I’m still procrastinating… Now I’ve remembered about Tracy coming from the channel Islands I feel all the worse if I miss it!
I’ll let you know when I decide.
How many of us Liver Birds are going to the May 6th meet?
Love to you all
Jxx
hi jacksy , yes you must do what your most comfortable with i agree , yes will miss you but only you can decide what to do for the best . have not ben around much of late what with half term and my 18 year old son has been a pain but thats another story .
these kids stress us out eh .
well speak soon , how many are coming again next week?
love Tracyxxx
Hi All
Jacquie agree with everyone that you have to make the right decision for you and at the end of the day there will be other meets that you can do, so whatever you feel most comfortable with really. I am still up for it, have told John to sort his days off to include Thursday. Got my hospital eye appointment on Wednesday afternoon, to try to find out what is happening with my eyes, apparently takes 2 hours, and am s******g myself about it really, as everything, as you all know, is a worry now.
So, as Tracy says, who else is coming along next Thursday, as far as I know, it is Tracy, Me, Kay, Cathy and maybe Jacquie. Not heard from Allie at all, will email her, bit worrying she has disappeared without a word at the mo - hope she is OK.
Hope all you ladies are doing OK though and life is treating you pretty well. Think we have escaped the jet lag - or have I spoken too soon, Both muppets sleeping through til we have to wake them at 7.307.45, although Jack being little bit of pain going to bed, taking 2 or 3 visits to him at night, so not getting any peace til about 8.45/9.00. But enough moaning, can’t really complain,
Speak later
Dawn
xx
Daw
Hi all
Hope all goes well with your eye appt, Dawn, and your onc appt, Jacquie, next week - it seems sometimes just to be one hosptal appt after another, doesn’t it? I’m feeling a bit fed up as I’m still having trouble with bleeding on the hormone treatment, so onc is referring me to a gynaecologist. And have also got my scan appt through for the 1st May. Want to go back on holiday again!!
I think there were a couple of other people to the meet who said they wanted to come but on another thread - I’ll see if I can “track” them down! And I think Allie said on that she was coming on the 24th - but she hasn’t posted recently at all. Emailing her sounds a good idea Dawn.
RIght - will go and see if I can find the others who expressed an interest in the 24th.
Take care all
Kay xx
With apologies to anyone I’ve missed (certainly not deliberate!) I think those who have expressed an interest in coming to the “liver birds” meet on the 24th are
Tracy, Dawn, Allie, Me, Cathy, Wrighty, Jenny (Seajen) and Barbara (Manon) (and maybe Jacquie).
K x
Hi Girls,
That sounds a goodly number for next week. I decided this morning that the thought of the funeral was stressing me out. Got quite teary at the thought of being at a funeral with my Dad and my Sister… I just don’t know how I’d be emotionally, and I wouldn’t want to distract people from their grieving process over M because I’m sitting there blubbing. So I’ve written and said how I would have really liked to be there in person to offer support, but instead I will be thinking of them lots.
This means I can still come and meet up! Just need to organise someone to pick up youngest cherub from school but that shouldn’t be too difficult. Can’t wait to see you all and meet the newbies.
Dawn, what’s this about your eye? Have I missed something?
Poor you Kay - the bleeding’s a pain as well as a worry. Hopefully they’ll be able to identify what’s going on.
I think it’s a good idea to email Allie -I’m quite worried about her now.
Hope you’re all doing okay, and just to say if there’s anyone else out there with liver secondaries who would like to join us at the meet - it’s never too late to speak up!
Love Jacquie