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
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
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.
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
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
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 🎂
Take care both of you, we are all with you in spirit.
Glad that you are being looked after well too. It's encouraging and calming to read people's positive experiences. Take care everyone.
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.
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,
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.
Just wanted to add my good wishes on here. It was great to meet and chat with you.
Very best wishes,
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
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
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.
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
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.
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
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
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
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.
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 (( )).
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!☺️