Anyone else with liver secondaries?

Public Archive
301

Hi all

Glad you had such a good visit to Paris, Cathy - sounds as if you had loads of energy which is great. Hope you have a lovely time in Scotland too, Dawn - stun them with your new wig - told you I had imagined you in my dream with beautiful auburn hair!! Am very jealous of the 2 of you going away on trips at the moment.

Good to hear from you as well, Anne and Jenny - really hope that you can join us next time. I don’t think any of us felt confident, Anne, but it definitely was worth all the worry beforehand! I’m sure your hubby was trying to help, ANne, but there is such a big difference isn’t there? It’s a bit like the “you could get knocked down by a bus tomorrow” comment - I have never yet met anyone who worries or loses any sleep over getting knocked down by that proverbial bus. As you say, we are “confirmed dying”.

I’m struggling big time at the moment - scans tomorrow and Thursday, pre-operative assessment on Friday and then into hospital on Tuesday. Really scared that the scans will show the tumour has grown again and is no longer operable, but then absolutely terrified of having the operation as well. I was at a meeting at work today and saw several people that I probably won’t see again in the next week. They were being really nice and wishing me well but kept saying the classic “you’ll be fine” and “it’ll be good when it’s all over and done with”. When I started talking about how I don’t know what the next step will be and that I might need more chemo etc more or less straightaway, I got the “keep positive” chat which really didn’t help at all! So am sitting here this evening feeling very stressed and scared basically. Definitely don’t want the MRI tomorrow…

Sorry, don’t mean to be down. Just finding the uncertainty of it all hard to cope with tonight. Had better close.

Love to all Kay x

302

Oh Kay

Just popped on quickly, so sorry you are feeling down and all worried about your scans, but hopefully they will be OK and the op will go ahead as planned, but can really and truly understand your fears. Scans are awful at the best of times, and even more so for you at this time, as so much depends on it. And can understand your fears about the op too, but hopefully once it is done, you will be recover quickly and then life will be oh so much better!!! I am worried for you too, and am thinking about you, also worried about my appointment next week and what he will say to me, and whether I have a chance of the op, but then like you, that scares me too.

Remember we are all there with you in spirit tomorrow, Thursday and Friday, holding your hand and helping you through it all. Wish I could be there with you too … although did contemplate visiting you next Friday quickly, but no doubt you won’t really be up for it, so flowers will have to be a better substitute.

Try not to stress too much, as that is no good for you. Just keep on thinking that your scans will be fine and the op will be your miracle!!! And you can pass it on to me too.

Quite looking forward to scotland now, as never got to go last year, and Johns mum has not seen Jack since last Feb, but she doesn’t have a clue what she is letting herself in for. Will get some pics of new wig and send to you when I can

Hope everyone else is OK too, and having a good week. can’t remember who is having what this week, but good luck anyway.

Take care
Lots of Love
Dawn
x

303

Hi Kay,
Its quiet normal to think like this, you are about to go through a big operation, but just think how “lucky” you are to have this option. I’m going for my appointment with the onc tomorrow so will be thinkng about you having your scans. We’re all here willing you along, and there’s a box of cappuchino truffles waiting for you.
Take care,
Allie

304

Good Luck for tomorrow Allie with your onc - sorry didn’t realise you had an appointment.

Take care
Lots of Love
Dawn
x

305

Good Luck to you all with scans and apps this week!

Love Jenny
x

306

hI Kay

Its no wonder you are struggling a bit as you say - typical people struggle to have a meeting with their boss and go to the dentist! We have to get through all of this - and god two days of scans and then an operation , well its a bit much!

You are at a great centre though with what sounds like a great team of people…certainly appreciate what you say though, you will actually probably get alot of people thinking thats done then when you have the operation and as you say there is still the huge uncertainty, I hope that makes sense. Its difficult dealing with people wanting certainty.

Will be thinking about you today with scans and Allie hope your appointment gos well today, I am off for a scan this afternoon and then followed by appointment with onc, so its a hat trick.

Love to all
Cathy

307

Hi ladies

Just a quickie to say I’m glad your ‘meeting’ went well and hope you can make it a regular occurrence, it must be much better to speak in person, but I have really had my hopes boosted by this site and all you kind, lovely ladies.

Good luck to everyone with scans, appointments etc I will be thinking of you all. I sincerely hope your scans go well Kay and that all goes well with the op, you deserve for it all to work out, so everything crossed and big hugs.

Sorry for not mentioning individuals, but will keep watching and catch up with you when things on the home front are not too hectic. By the way, I have a liver scan and chest x-ray next week.

Lotsa luv, take care
Jen xxx

308

Hello All

Well, after my concerns with my liver, I had CT scan (results all ok apart from 4mm cyst but no change since August and its now not enlarged), onc reg then decided it was time for bone scan to see if bisphosphonates are doing their job (had that done last Friday) and she also arranged an ultrasound on my liver (had that done on Monday - bloke couldnt find the cyst and everyhting looked ok), so I’ve got an appointment this afternoon to discuss results.

Am starting to panic now - saw quite a lot of white areas on the screen whilst having the bone scan!!!
It was strange because I was quite close mates with the radiographer at school - so whilst I was lying there, we were having a laugh reminiscing!! (Cant remember if I’ve told you that one before-oops!!)

I feel like I have lived at the hospital for the past couple of weeks!!!

Good Luck everyone! Thinking of you all

Love Anne xx

PS Kay - people really wind me up when they say ‘you’ve got to be positive - you’ve got to fight it!’ - how on earth can we do anything about what’s going on inside our bodies??? We can just go with the flow - they dont know what they are talking about, do they? I hope that you are feeling a little bit better today xx

309

Hi All,
Kay, I hope the scan wasn’t too awful, I hate it when they push that horrible stuff in your vein and it makes you feel like you want to pee! Yuck!
Had my appointment today, started on Zoladex and next time I go I will be started on Aromasin I think. The Onc said its a subcut injection so I said being ex nurse I could it, anyway she said no, that its a big needle and i will need local anaesthetic with it. I nearly fainted when I saw the needle, blimey its big! Anyway all my bloods were pretty good and tumour markers are 32 so I am very pleased. CT scan in two weeks.
Finally picked up my new Mini today and think its about time to plan a holiday for April.
Dawn have a lovely time in Scotland
good luck everyone with scans, appointments etc
Take care
Allie

310

Thank you all so much for your support - I knew you would understand. I am feeling a bit better today though still very emotional. Had a good morning at work - was with the children which always helps rather than having to do the admin or attend meetings. Then had my MRI which wasn’t too bad despite them struggling to find a vein - it took 4 attempts and 3 different people! I’m going to have an almighty bruise. They were all about to call the consultant but a lovely radiographer called Mark managed to get the line in and then sat chatting with me for ages as the horrible yellow stuff (why does it have to be such a vivid colour?!!) dripped in. So just the scan tomorrow, then the pre-op assessment and the operation to go! Just wish I could get rid of the permanent butterflies in my tum (and the feeling of dread). I’ve also been getting really awful indigestion - made me sick on Monday and has been waking me up in the night - but gp has given me some lansoprazole, so hopefully that will do the trick.

Lots seems to be going on for everyone - don’t know whether I’ll pick everything up but I’ll give it a go…

Brilliant news about the tumour markers, Allie - 32 is almost within normal limits I think. Enjoy the mini and go book that holiday - you deserve it. ANy thoughts on where? And cappuchino truffles - yum!

Anne - good news too about the liver. Hope that the bone news is also ok - good luck for tomorrow.

Dawn - would love you to pop in and see me next Friday even if it is only a head around the door. I hadn’t suggested it though because I thought it might not be right for you - I’d understand completely if you’d rather not see what someone is like 2 days after liver resection! SOmetimes you can just have too much info! Plus you need to focus on your appointment with “the man”. So I’ll leave it entirely upto you - I’ll try to get David to email you on the Thurs briefly to say how things have gone. Have a lovely time in Scotland meanwhile.

Hope work is still going well, Jacquie. I think you’re right and it may affect how you may treat the parents/children. I certainly watch very carefully now how much information I am giving and try much harder to write key things down for people as well. I’m also much more sympathetic/patient if they come back time after time asking what seems to me to be the same question.

SO many of us are having scans/appointments etc at the moment - so good luck to everyone!

Thank you again for helping me get (nearly) back on track.

Lots of love

Kay x

311

Hello all you lovely ladies - what a wonderful crowd. There’s just so much going on for everybody at the moment - so many scans and appointments and so much to worry about. It’s so good to hear all your news but I can’t hope to remember it all. Suffice to say I care about you all, as do lots of other people on here.
The bits that stick in my mind are Allie’s giant needle!! and Kay’s butterflies in her stomach. You poor thing, I can really imagine how worrying it all is, and needing the scan results to be right etc… What are you doing at the weekend? I think you’d better keep really busy or you’ll be a jibbering wreck!
Dawn, are you sure it’s a good idea to visit her so soon? I’m sure it would be lovely for you both to see each other, but like Kay says, it might be a bit much to handle seeing her so soon after, and presumably still in HDU. Bit of a reality check!
Cathy, Paris sounds brilliant. It’s great to just get away from it all and think about/see something completely different, isn’t it? What is your scan for next week? Is this the halfway through treatment one? Sorry if I’m totally wrong.
Dawn have a brilliant time in scotland, that Granny’s going to be bursting with pride, if she hasn’t seen the children for so long. Kay, I will be thinking of you for your scan tomorrow and other pre-op stuff, and will be ‘holding your hand’. Jen hope scan and xray next wk are OK. Anne hope you got good results today - it’s great news about your liver. Allie your bloods & tumour markers sound excellent - take a brand new mini round the block to celebrate!
I’m starting to get that gnawing feeling in my stomach about my scan results on Monday, and discussion about whether liver resection/ablation is possible.
Love to everyone
Jacquie

312

hello All

Wow there is alot going on …

Allie, thats great with tumour markers at 32, really fantastic. Definitely need to take the mini out and celebrate and maybe some coffee flavoured truffles, my personal favourite,

Kay - glad MRI went OK, really hate these things and it makes such a difference when they can just come in find the vein and do the business without any trouble. Glad you find work a distraction…for me I dont have any lovely children to work with, just junior accountants who need me to supervise their efforts! Not quite the same thing but it has a similar effect on me, tend to be able to put things aside.

Well I had my scan and my results today. Onc was pleased liver tumours have definitely shrunk, not hugely but definitely smaller, so continuing with taxotere he said that results were good … Bones are looking suprisingly bettter with areas of bone healing. I have a few little spots here and there and now know where they are as I summoned up the courage to ask.

What was interesting is that they can deliver the scan and results in the same day as all the computers are linked…one good thing. I think thats a good use of the technology - its just a shame it seems to be an exception.

Thinking of everyone else with their scans etc, its all so hugely stressful, felt like crying afterwards even though the news was encouraging. jacquie I hope everything gos well on Monday.

My distraction project seems to be going quite well, bedroom redecorated, curtain rails hung, lighting man on saturday and then curtains! its going to look good.

love to all
cathy

313

Hi Cathy,
That’s excellent news the liver tumours have shrunk - definitely what we want to hear! It helps for when you carry on with treatment - if you know it’s working you can put up with almost anything. Your bones sound amazing too - I hadn’t really thought about it but I didn’t know they could heal! Glad you didn’t have to wait too long. (Unlike me - 9 days and counting).
Enjoy your lovely new bedroom, sounds fab.
Love to everyone else and have a great weekend
jacquie xx

314

Hi everybody

What fantastic news Cathy! Really pleased to hear the tumours are shrinking. Hopefully you will have similar news on Monday, Jacquie.

I had pre-operative assessment today at the hospital and as well as lots of blood tests, an ECG, tests for MRSA and a lung xray, the very nice staff nurse took me up to the high dependency unit. Bit scary but I think I was glad to see it in advance - won’t seem so strange when I wake up in there on Wednesday. It all seems very very real now and in many ways I think I would just like to get on with it now. Planning to have a nice relaxing weekend though - might go and walk on Box Hill if the weather is nice.

Love to everyone

Kay xx

315

Kay

I always read this thread though I don’t have liver mets…its one of those great threads!

Just to say hope your operation goes well next week…can imagine how scared you must be feeling and hope it all goes really smoothly…with good results.

Hope you got to walk on Box Hill…weather glorious here in Winchester today. I’ve been walking the beach in Dorset.

best wishes

Jane

316

Hello all

This seems such a cheery group that I can’t resist joining in… I have one liver secondary as well as peppering of small lung secondaries ( the scan looks a bit like a Guy Fawkes night firework display…). It’s the liver tumour that clearly has my onc worried though, so I’m waiting with bated breath to see how (if) the arimidex works. I had a good response to taxotere and kept pretty well through the first 6 sessions (though 7 and 8 were dire!). It’s clear though that liver secondaries are not a good look so it’s really encouraging to hear from women on this site who are still enjoying life some years after dx.
Apart from that what I can’t get my head around is how well I feel. I’m still at work, and feel fit and well with no cancer symptoms at all. The only aches and pains I have come from the Arimidex! It’s really difficult to take on board that I have a terminal illness - even though I hope to delay the terminal bit for a good few years yet. So - never say die, I’ve signed up for the 5k race for life in Cambridge. I used to run a bit (not far and very slowly!) until I started chemo and I’m determined to get my fitness back up to a decent level over the next month or two. Anyway, if all else fails I can walk the course. Anyone else live around Cambridge and planning to join in?

317

Hi Manon

Nice to 'see ’ you on this thread…but sorry we are all here in the first place.

Oh goodness me I understand, I have done the race for life before and really enjoyed it, need to get some fitness back as I feel a bit podgy now!! Do you have bone mets- I wonder about running and bone mets? I have been wondering about signing up for it again, but you are right you can walk it and thats nice too as it is all women etc and no huge beefy guys lapping you as I have had some at other things. I will have to sign up for Richmond, but I think you have definitely inspired me to have a look.

Anyway just a quick note to say hello - back to my work as I am still at work and doing alot of work from home - Sunday morning post chemo a good time to catch up…

take care
cathy

318

Hi Cathy and Manon

I’ve done 7 race for life’s over the years but now that I’ve got liver and bone mets I know I wouldn’t be able to do it. I live about 30 miles from Cambridge but have never done the Cambridge one. I remember doing a Crocus Walk or something in Cambridge around 6 years ago but can’t remember who organised that.

Went out for a walk today and did around 2 miles which I’m really pleased about and although I can feel my spine (it’s in all my vertabrae) I’m really chuffed with myself! I certainly wasn’t able to do that a year and a bit ago as I was so ill but have lived with it since 2004 and am on long term chemo and pamidronate - long may it continue!

Pinkdove

319

Hi Manon,

I live in Willingham. Whereabouts are you? Maybe I’ve seen you at Addenbrookes.

I have never done the race (or walk) but may do so this year. My partner is quite a serious runner now and is making me look v. lazy (and fat!). I am feeling quite determined to lose some of the many kilos I’ve acquired in the last two years or so. When is the race?

Jenny
x

320

Hi Everyone

Welcome Manon, nice to meet you but sorry you are here too. I completely agree though about this being a good cheery group, I think we have all done so well and the support from each other is amazing.

Well wot can I say, here I am sitting in Scotland still, fly back to stansted tomorrow, but at last, there is no rain. It has basically rained since we got here til this morning, so been pretty grim really. Been OK though, although not done too much. Gran and Auntie been having fun with the kids though and spoiling them rotten really, and sophie out again now, while Jack is sleeping again. But can’t wait to get back home and my routine again and proper nights sleep, both been bit unsettled.

Kay, hope you got my last email and hope you not stressing too much about the week ahead. I am there holding your hand all the way, as I know you will be, if the Prof. says yes to me. I will definitely try to pop in Friday as think will have 10 mins spare, but as said in email not sure if will be allowed as you will be in HDU, they may say family only. But I am thinking about you all the time at the mo, wondering how you are etc. Just think, this time next week it will all be over and you will just need to rest and get well as quick as you can.

Cathy glad your scans went OK and really great news about the shrinking - no matter you saying it is not huge shrinkage, but any shrinkage is great news. I have been a little bit out of touch as not been on computer hardly since being in Scotland (sad bringing it I know, but couldn’t bear to be away from you all for that long and not know what was happening). Hope you are not working too hard though and trying to take things a little easy. Not sure how you do all the commuting and working, but spose similar to me running around after the little ones!

Allie, same to you too - sounds like your markers are great news although I really dont understand them all, as never mentioned by my onc. Good luck with your ct scan though in 2 weeks time. But hope you have not got too many speeding tickets now in your new fab mini and are not terrorising the locals around there.

Jacquie, how are you doing and whats going on with you. Hope you having a fab weekend too and ready for work tomorrow. Good luck for tomorrow though with your scan results and hopefully good news. Can’t wait to hear what your onc says about resection and ablation though.

Anyway, hello to everyone else on here, and sorry for anyone I have not mentioned. I prob won’t be on tomorrow as travelling back home, flight at 4pm but we were delayed coming out, fingers crossed we are not tomorrow. Good luck to you all this week, with scan results and treatment, but especially to Kay and to let her know how much we are supporting her.

Take care all and lots of love
Dawn
xx