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Liver Mets- Really Scared

50 REPLIES 50
Moijan
Member

Re: Liver Mets- Really Scared

Just thought id bump up this thread, in case any new ladies werent aware of itxx

 

I have liver and bone mets. Mine seem to be reducing at present which is a blessing. However, 

i recall just how scary it was when I was given my mets diagnosisxx

 

MoijanxxπŸ’šπŸ’šπŸ’š

Louibelle
Member

Re: Liver Mets- Really Scared

 
Moijan
Member

Re: Liver Mets- Really Scared

yes, Happy Birthday TomboyπŸ’™πŸ’šπŸ’–πŸ’—πŸ’“

Marirose
Member

Re: Liver Mets- Really Scared

Happy Birthday Tomboy

Love and loads of ((((((((((((((((((((hugs)))))))))))))))))))) xxx

EJ81
Member

Re: Liver Mets- Really Scared

Happy birthday Tomboy. I hope you got to spend it with all the people who matter the most xxx

helen44
Member

Re: Liver Mets- Really Scared

Hi Tomboy and Smartie
Thinking of you both and hoping that you are getting as much support as possible from the hospice.
Sending big cyber ((((((hugs)))))))
Love Helen xx
Moijan
Member

Re: Liver Mets- Really Scared

Yes Carolyn, So glad you mentioned that, I have heard of people going into a hospice every now and then to get their meds sorted or get a quick health boost, then returning to their home again...I think thats where Hospices come into their own. Xxxx Moijan

Moijan
Member

Re: Liver Mets- Really Scared

Hi Smartie, lovely to hear from you and that you are comfortable and relaxed. I think complementary therapies are great for restoring some life balance, taking time to 'smell the roses' too.

lots of love, keep in touch.

 

Moijanxxx

Moijan
Member

Re: Liver Mets- Really Scared

Hi Tomboy, really lovely to hear from you. I kept checking back, hoping you let us know how things are for you and I messaged you too!. And im  overjoyed that you are somewhere that you like....sounds as if they are looking after you well. 

 

Are there any groups where you are....groups have a great record for extending our lives...not just saying that...the Simondsons in USA found this to be so....look them up. At any rate, its helpful to meet up with others all in the same canoe!   I realise we have to have a measure of acceptance, but when Doctors say things..it sounds like gospel....and they havent a crystal ball..they mean well, but they arent right all the time.

 

lots of love, and keep in touch. Moijanxxx

scratch
Member

Re: Liver Mets- Really Scared

Hi smartie and tomboy...thinking of you both..get plenty of help in there.takecare love Sharon.xx
stresshead
Member

Re: Liver Mets- Really Scared

Hi Tomboy.. and Smartie.

Glad to hear you are both in a happier state than before. Its reassuring to know abot the hospices.

I visit one as an outpatient but have never seen the 'wards'...scares me silly but now you have experienced them i dont feel so scared.

Tomboy, i hope yu have a lovely birthday with your friends and family close by.xx

nicky08
Community Champion

Re: Liver Mets- Really Scared

Hi tomboy and smartie. Just adding to everyone else's positive thoughts for you both and thanking you for updating us all - you know how much we want to help. I hope you both are comfortable where you are and taking advantage of all the excellent help that I have heard hospice nurses give as well as the extra complementary therapies on offer. Not long now till your birthday tomboy, hope you have a big cake and manage to enjoy it πŸŽ‚

Take care both of you, we are all with you in spirit.

Nicky x

Tournesol
Member

Re: Liver Mets- Really Scared

Hi Smartie,

 

Glad that you are being looked after well too. It's encouraging and calming to read people's positive experiences. Take care everyone.

 

 Tournesol x

Carolyn52
Member

Re: Liver Mets- Really Scared

Hello smartie and tomboy
These days hospices are like five star hotels for comfort and care. I visited a friend in one a few years ago ..she had her bed and bay beside patio doors which opened onto a beautiful garden area and she was very happy and content to get the right care. She actually came home after a few weeks .after getting the right medicine for her bc and lived alone for some time ..aged 88.
Hugs xx
EJ81
Member

Re: Liver Mets- Really Scared

Tomboy, thank you so much for your update. I'm glad both you and smarties are being kept comfortable and feeling well looked after.
Lots of love, Ellie xxx
Smartie
Member

Re: Liver Mets- Really Scared

Hi Tomboy, I am also in my local hospice - came in on Friday. I too was so nervous but it has been relaxing & I feel more comfortable than when I arrived. Complimentary therapies in the week here so looking forwards to perhaps trying something tomorrow. Enjoy some time with your family & stay comfortable . Much love.
Smartie x

Waffles
Member

Re: Liver Mets- Really Scared

Hi Tomboy,
Lovely to hear you are being well looked after and are near your family. Enjoy all the wonderful therapies available and the tennis this afternoon. Happy birthday when it comes. ((((Hugs))) and best wishes xxx
Tournesol
Member

Re: Liver Mets- Really Scared

Hi Tomboy,

 

Great to see your update today. It sounds like you're in the best place right now, and glad that you are able to take advantage of some more complementary therapies too. I'm still on the ward & improving slowly. Much less bored now as I can move around the ward with a frame.

 

Take care and keep us posted if you feel up to it.

 

 

Tournesol xx

Carolyn52
Member

Re: Liver Mets- Really Scared

Hello tomboy
Glad u r back with your family and settled in with proper care .
Enjoy the tennis and your birthday ...
Loads of love xxxxπŸ’ŸπŸ’ŸπŸ’Ÿ
scratch
Member

Re: Liver Mets- Really Scared

Hi tomboy was just reading your posts..enjoy the hospice they are not as scarey as people think.and only three days to birthday
.
Enjoy watching the tennis 🎾..and hope you get loads more therapys.thinking of you..xsharon❀
tomboy81
Member

Re: Liver Mets- Really Scared

Hi all. Thought I owed you a little update as to where I'm at. I travelled bank up North to be we with my family and was admitted to the local hospice on Tuesday. To be honest I was pretty nervous because about it because I'd never been to one before and I'd just got settled at home. I can honestly say it's the best decision I made. It's such a happy place and I have someone managing my medication, adjusting when needed. This totally takes the burden off my family so we can enjoy proper time together, rather than things slipping through the cracks. Ooh, whilst I'm here I'm also getting lots of yummy alternative therapies such as reiki, crystals an reflexology πŸ˜€
Anyway, I'm wittering on and beginning to sound like an advert so I'll leave you awesome ladies to it. Big love to Tournesol- I hope they're managing to fix you up and you'll be roaming the streets again soon! Thank you to Moijan for your lovely messages too. I don't know how I would have got through this without my amazing cyber family ❀️
Right, I'm off to be stubborn and reach my 35th birthday in 3 days time..,, Enjoy whatever you've got planned today- It'll be the Murray match in my room today!
Moijan
Member

Re: Liver Mets- Really Scared

Hi Tomboy. Yes, good to be nearer your loved ones.

 

Like everyone else, I too hope the onc is wrong....and they can BE  wrong. A while ago I met a lady at the opd ( where else?) who had been given really bad news and was told to fly home and do exactly what she liked......i met her again 6 months later and said Hi, how are you? And she said oh, all my tumours have shrunk and im feelng great! They are happy with me.

 

Honestly, no-one knows the future. They have to be frank about what they think.

 

in your place, I hope I would be able to continue practicing my mindfulness, so as to feel as if I had some control over my thoughts.....thoughts tend to run riot when I get bad news, so I find it hard to stay in the present.......which is all any of us have, really. The one certainty is now.  I think the one thing I learned from having cancer is to make each day count and to do all the things I want to do...now. Im not slways successful, but I try.

 

I know you will make the right choices for you, you sound a very wise lady. Please keep in touch if you find it helps. Sending you lots of loving thoughts and prayers,

MoijanxxxπŸ’œ

nicky08
Community Champion

Re: Liver Mets- Really Scared

Hi tomboy, so shocked with the news that your onc gave you. As with the other ladies I hope he is way off the mark regarding timescales. Hopefully you have managed to get out of hospital and, if not, that it happens early tomorrow and you get to see all the important people in your life as soon as possible.

Nicky X 

Tournesol
Member

Re: Liver Mets- Really Scared

Hi Tomboy,

Just wanted to add my good wishes on here. It was great to meet and chat with you.

 

Very best wishes,

 

Tournesol x

stresshead
Member

Re: Liver Mets- Really Scared

OMG Tomboy...this is such a shock. I just want to echo everything that then others have said. I dont really have words to help but just wanted you to know we arfe all here, thinking and praying for you. You seem to be so brave and stoic, you are an inspiration. Much love.xx

EJ81
Member

Re: Liver Mets- Really Scared

Tomboy, I'm just catching up. I'm so sorry to hear your news. I hope your Inc is wrong about timing and you get to spend your birthday with everyone you love. Thinking of you and sending lots of love. Ellie xxx
Barton
Member

Re: Liver Mets- Really Scared

Hello tomboy, just adding my good wishes and hopes to everyone else. They have said it much more eloquently than I could have. So sorry to read your news, but hope the Onc is wrong. Best to be with your family anyway, though. Much more comforting.

 

Thinking of you.

Hugs and best wishes. Barton.x

Waffles
Member

Re: Liver Mets- Really Scared

Hi Tomboy,
Like Helen, I hope your Onc is wrong with his assesment of your condition. I hope you can get out hospital soon to spend time with your family and that you manage to get some sleep. My thoughts and prayers are with you. xxx
HelenAquarius
Member

Re: Liver Mets- Really Scared

Hi Tomboy,

I'm hoping desperately the onc has been way off on his prediction. Being where YOU want to be is the most important thing at this time, so you can deal with this moment in your head and get a sense of calm and acceptance and have some happy beautiful moments if time is short.  

 

Much love

helen xxxxx

Carolyn52
Member

Re: Liver Mets- Really Scared

Hiya tomboy

No place like home and no doubt they will be discharging you soon but at least you have support there ....

Living and working in London must be a fast pace and so enjoy the rest ...

Hugs xxx
tomboy81
Member

Re: Liver Mets- Really Scared

Thank you everyone for your kind words. I'm still stuck in hospital and just desperate to get home now. The sleep deprivation and rubbish food are really getting to me now. It's making all of this so much more difficult to deal with mentally. If I don't have long left I want to be out of here asap! However as it's the weekend the discharge process has come to a bit of a standstill....
Once again, thank you for your kind words and support. I'll keep you posted as much as I can xxx
Carolyn52
Member

Re: Liver Mets- Really Scared

hello tomboy

 

I really don't know what to say but from all of us here we will be thinking of you.   Assume by going home it means to your mum and dad. Nothing better than being with family for some tlc.

Please post here day or night and I'm sure someone will be awake as we are a lot of non sleepers!

Loads of hugs and kisses xxxxxx

helen44
Member

Re: Liver Mets- Really Scared

I am so sorry to read about your situation tomboy81, you must feel very scared at the progression. I hope that you find comfort in being with your family and friends, am thinking of you xxx
Smartie
Member

Re: Liver Mets- Really Scared

Oh my gosh, what unexpected news, I am so sorry to hear things have progressed so quickly. It's so tempting to carry on the fight & I know at the end of the day you will do what's right for you but to be comfortable and with family is so important at this incredibly difficult time.
Thinking of you and your family, with much love.
Smartie x

tomboy81
Member

Re: Liver Mets- Really Scared

Hi all. It's not good news from this end. I had a very frank conversation with my oncologist this morning who said the cancer in my liver is progressing at such a rapid rate that further chemo would make me very ill and not really change the situation. I seriously need to think how I wanted to spend my final days (i.e in pain at hospital or having relief at home with family) She urged me that whilst I still felt fit and well I should travel back up north Asap. The hospital have been great and are arranging hospice at home care for when I get back. Part of me wants to continue the fight and go for the chemo but then my family are desperate to have me home (I live and work in London with my partner right now) I just can't believe it's got to this stage. I feel absolutely fine and my shiny new drain is providing great relief. Onc says liver can deteriorate very quickly and I might not even make my 35th birthday in 12 days time.... Shock and disbelief.
Smartie
Member

Re: Liver Mets- Really Scared

Morning Ladies.

 

glad you are getting sorted with the drain, you will feel so much better. I am still swollen & uncomfortable and don't want to speak too soon but it seems to have gone down on its own over the last few days, (perhaps the diuretics are helping although kidney function was a little impaired on Tuesday's readings so need to keep an eye on things) I have been measuring the circumference of my abdomen in various places and it drops during the day so it's not pressing too much on my lungs. Being in bed is a different matter though and I am desperately trying to prop myself up.

 

i quite fancy trying Reiki too, I've had reflexology a number of times and found it to be well worthwhile, I am waiting for the hospice to give me a call to try and book myself in.

 

i just wish I could wake up and feel well, or even marginally better, one morning. I am taking sleeping tablets so not sure if it's the after affects of those but I am exhausted, of course it could be the chemo (just had 2nd dose on Wednesday) or the cancer in the liver, who knows, just want to feel human, walk to the shops, go and buy a paper, not too much to ask is it?

 

Moijin just wanted to say that I did 13 cycles of Eribulin all together in two batches. One from February/March last year until June and then from December 2015 until April this year. It is scary reading about the side effects and not knowing how toxic it will be. I have to say that although my bloods suffered (anaemic) and low white cells I did tolerate it pretty well otherwise and it held my lung and liver mets at bay, so fingers crossed it has similar positive results for you.

 

good luck ladies and hope you are not suffering too much, Tomboy, glad you are feeling ok even if the blood results show otherwise.

 

hugs

Smartiex

 

tomboy81
Member

Re: Liver Mets- Really Scared

Thanks so much for all of your kind words ladies. It's really helped to reassure me. I definitely intend to continue with the reiki if I can. My mum is a big fan of reflexology so might give that a shot too. Like you, don't think I could do the acupuncture (so fed up of needles!!!!)
Overall, I'm just trying to take solace in the fact I feel fit and well. I certainly don't feel like I'm going to die today or tomorrow!
I hope all of your treatments continue to kick that evil C in the butt! Sending you big, big hugs xxx
Moijan
Member

Re: Liver Mets- Really Scared

Hi tomboy 81, Reiki, yes, I do believe its powerful stuff. Quite a few years ago now I met a Reiki master in a coffee bar on Scotland. She said she would send me some Reikhi at 6 pm that evening and, you wont believe this, but I had definite unusual tingling in the arm at 6 pm, I was a bit surprised.

 

Many years after, an old friend was practicing Reikhi on me and whilst he was standing at the foot of the table, i felt a hand on my shoulder!

 

whilst we are on the  'esoteric' I have read research that showed a group of buddhist monks meditating in an area where there was a lot of violence...the level dropped! i recently heard that people who have others praying for them do better...and I dont think they had to beleive in it, it still works.

 

there is alot we dont know, or understand.  Getting back to basics, I recall someone saying in this thread Tomboy 81' that the drugs had caused her swelling, similar to your own,  that made sense...so if there is no obvious sign of cancer blocking the flow, that could be a good sign?

 

and sharon, I too, often get scared, im sure most of us do.......maybe when things feel out of our control?

 

love and hugs

 

moijanxx

scratch
Member

Re: Liver Mets- Really Scared

Hi tomboy81..i have peritoneal liver and bone Mets..i had swollen stomach in November spent a few days in hosp having six litres drained.two weeks later I filled up again and had five litres drained.i had discoloured toilets..then i had my third chemo docetaxol
Finished that in march...am on examestane hormone ..stomach still gets bit dodgy sometimes but no swelling ..hope this stays like it for a while..got ct scan on July
I had a Reiki session this morning and my stomach gurgled and growled like mad
I fo believe Reiki helps and reflexology
Never tried acupuncture coz of needles..i find it best to eat three meals a day and not massive plates full..so my body can digest it...i get petrified sometimes too
..take care .sharon.❀
Waffles
Member

Re: Liver Mets- Really Scared

Hi Tomboy,

Sorry to hear you are in hospital. Hope things go well tomorrow.  I was sceptical about things like Reiki Healing too until I tried it. It certainly works for me too. Glad it is helping you.  Best wishes xxx

tomboy81
Member

Re: Liver Mets- Really Scared

Hi Moijan. Thanks for your reply. Whilst I've been in hospital I've been taking full advantage of the alternative treatments. The Reiki sessions have been amazing- I'd definitely recommend it. Not only did I totally get lost in the moment but it really felt like the therapist was doing something to my liver. I felt so much movement and heat in there (and usually I'm quite sceptical about these sorts of things!)
Well, after being admitted on Monday for a drain I'm still trapped in hospital. I've just been told this will happen tomorrow at 9am (hurrah!) They're also inserting a tube so if the fluid builds up again it can be easily drained at home or by a district nurse.
Unfortunately my CT scan showed no obvious blockage in the liver which could be cleared or have a stent put in. As such, it's probably the advancing cancer which is causing the birubilin build up and jaundice. On the plus side, I'm convinced my pee and poo is returning to a bit more of a normal colour (so that must be a good thing, right?) I'm also eating normally, no nausea, vomiting etc. Feeling absolutely fine in myself.
The plan is to start paclitaxel chemo asap (weekly for 3 weeks, then one week off) God, I hope this one works....
Moijan
Member

Re: Liver Mets- Really Scared

Sorry for my late reply, sounds as if you are feeling you have a bit more control over things today, hope things get sorted for you.  I shared that I too get scared, im going for my 2nd Eribulin tomorrow and im feeling powerless about it, people have been occasionally dangerously ill on that drug( or worse) like many of the other drugs. the consent form isnt specific about what can happen and of course, like you,( like everyone) I want to survive... With good quality of life for as long as possible, we are told we have a choice, but what choice do we have? We must rely on our doctors to advise  us

 

i am going to try to use mindfulness more, to get some control over my thoughts.....im not an expert but want to get better at it. I managed it for a short period and found that worries were more controlable, but it goes again quite easily....needs practice.

 

I hope your day has been a better one, please keep us updated about how its going. I think the drugs do affect the liver function tests and bilirubin, they couldnt do otherwise, but usually things go back again as the body recovers, I was on Cape for almost 2 years and after the first two months things settled down....well done with the fluids, I must not have been and I was a bit lazy, I got a dvt! Looking back over my bloods, my bilirubuin went up. 4+ times, but not as high as yours, also my Lfts were raised ( they are much worse now tho)

 

love and hugs, Moijanxx

tomboy81
Member

Re: Liver Mets- Really Scared

Thanks for the handy hints Moijan. I must admit I'm terrible at mindfulness and definitely need to work harder at it! I think that being able to completely live in the moment would be a real help right now!
Great minds think alike about the water! Despite the enormous belly I've been chugging as much fluid as I can. Already I've noticed a change in the colour of my wee (returning to yellow) and I've been pooping LOADS! It certainly feels as though my body is in a hurry to get rid of something in there!
Amongst all of the flap surrounding my liver I did a bit of self research last night and it clearly states that capecitabine can cause high birubilin levels in some people- yet no one seems to have mentioned this!? My levels have always been fine before starting the drug so you'd think that might have something to do with it??? But hey, what do I know? πŸ€“
p.s Sorry to be so graphic about toileting so early in the morning!
Moijan
Member

Re: Liver Mets- Really Scared

Hi Tomboy81.  Sorry you are having a bit of a scare, I havent had that particular scare, but I can certainly identify with the feeling of 'whats happening to me?' I think the others had some helpful ideas/ experiences to offer, I havent really, but do have liver mets,  tiny seeds all over it and one larger met and recently was told its grown a bit, so I know about the uncertainty thingy. Also, im never a good in - patient, always start thinking 'am I going downhill'!

 

I was thinking that unless they say don't...drinking lots of water will help flush out  any toxins...also ( and im really bad at this) but 'mindfulness' the ' In' meditation is pretty good if you can do it, to get a grip on the 'nagging mind'. 

 

My n/spec recommended a book recently called Mindfulness for health, by Vidyamala Burch, it just arrived from Amazon today,so dont know how good it is yet, tho, there is a downloadable kindle version which is much cheaper I think and that would be immediate...I ordered my book yesterday it has a cd,so when i find my cd player, ill have a listen.

( I just paused typing to have a quick look and she seems to be making a lot of sense) the other thing is.....

Try not to get spooked by the doctors tone...... I find myself reacting to tones all the time, but they all have lots of things to do/on their minds and her tone might be irrelevant regarding your situation.

If its any help, I had a partial hepatectomy in 2008 and was scared I was going to die! So I have been there.

the op was pre mets, but that bit was diseased so it had to come out.

let us know how things are going.

moijanxx

tomboy81
Member

Re: Liver Mets- Really Scared

Thanks Maria Louise. I really hope that happens to me! I've recently done 2 cycles of the oral chemotherapy drug, cape. However I had such major toxicity from the first dose, my second cycle was reduced. Since the jaundice episode and hospital admission I've been taken off the cape completely. Maybe it's in my head but I swear my pee and poop is looking a more normal colour!? Let's just hope it's the drugs messing me up and not the cancer! I hope your treatment continues to smash it out of the park ML. Sending big cyber hugs back xxx
Rose47
Member

Re: Liver Mets- Really Scared

Hi TomBoy,

 

Just read your post and thought I would tell you what happened to me.  After my 5th FEC my liver and bloods had a bit of a wobble.  My eyes were jaundiced, I was very sick, my wee was very bright yellow and my stools were very pale.  A scan showed that I didn't have a blockage and in fact showed that my liver tumours had either shrunk or disappeared.  I spent 6 days in hospital on IV antibiotics although they coudln't find an infection in the tests that they did and it took a further 2 weeks for my levels to sort themselves out before I could have my next chemo. 

 

Not sure if you are on chemo at the minute but apparentley this can happen sometimes as the effects build up.  I think from past blood tests done many years ago my billirubin has always been on the higher side.

 

Sending you a big hug (( )).

Smartie
Member

Re: Liver Mets- Really Scared

Don't worry, seems I have fat fingers too, just noticed I said people's names at the end of my email! That's spellchecker should have read people's abdomens!☺️

xx

tomboy81
Member

Re: Liver Mets- Really Scared

Sorry! Ignore the accidental V (fat fingers!) I meant doxorubicin 😊
tomboy81
Member

Re: Liver Mets- Really Scared

Thanks smartie. The fact you're feeling better and on new treatment gives me hope. Onc said my birubilin was crazy and other liver function tests "less crazy but still high" I just can't get my head around it because apart from weird pee/poo and sloshy tummy I feel great. Not ready to be written off yet! I hope the V chemo is the magic bullet for you and I can follow in your footsteps! πŸ˜€
Smartie
Member

Re: Liver Mets- Really Scared

Hi Tomboy.
I had ascetic drain just over 2 weeks ago, my stomach was massive, hard & distended & so uncomfortable- no pain but couldn't breathe properly or eat as everything felt squashed inside.
They drained off 1.6 litres over 24 hours but it didn't get rid of everything as there are still some pockets of fluid in the tissue which they are trying to sort with diuretics.
I wasn't jaundiced and my Bilirubin reading (I think indicates bile production) was fairly normal however some of the other liver blood results were off the scale so liver definitely not working properly. 2nd dose of new for me, chemo (weekly Doxurubicin) tomorrow so hoping this will have some effect.
The fact you are feeling ok & moving round has to be a good sign so take some positive thoughts from that, I felt like I was at deaths door & still don't feel well but things appear to be moving in the right direction. The interventional radiographer who did my drain said he treated a large amount of alcoholics who recovered somewhat after the drainage. He has drained off 8-10 litres before now on certain people's names one go!
Good luck & hope the drain gives you some relief.
Smartie x