Hi ladies. Just looking for TLC/cyber hugs/reassurance. Currently in hospital awaiting for ascites to be drained. I’ve also gone a bit jaundiced and my pee and poo is all discoloured.Just seen consultant who says they’re going to do an ultrasound to investigate the possibility of a blockage in the bile duct. However, if the cancer is causing the problem, chemotherapy options may be limited if my liver isn’t working properly. Her tone has really scared me, like the end is nigh. Has anyone been in a similar situation? Apart from my massive belly I feel absolutely fine! I’m fully mobile and eating/drinking/toileting normally. I certainly don’t feel at death’s door! Petrified.
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
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! ?
Sorry! Ignore the accidental V (fat fingers!) I meant doxorubicin ?
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 (( )).
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
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
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? ?
p.s Sorry to be so graphic about toileting so early in the morning!
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…
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.
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
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
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.
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
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
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
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
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
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
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