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Hi moijan…i havnt been sicky or bad mouth yet…my hair is still intact…but I feel yuk…McMillan nurse came this morning she is going to find out who my specialist b.c.nurse is
.as no.one ever til me and were all supposed to have one.and the nurse is going yo get me appt to specialist palliative Dr at hospital to ho through my scsns with me…as last report says I have mild kidney prob and lung mets❓ …no.ones told me this news and I now need to clarify properly or Il go mad…or madder?..shes going to phone me today said maybe a typo error…xx
Hi Sharon, sorry you feel yukkie. Maybe is was a typo error, certainly they should be keeping you apprised of exactly what is going on… Would it help to try and hold firmly on to the fact that Eribulin is working and may be causing the yukky feelings? I mean, it feels possible to me…ive been feeling a little down, and today a little dizzy even, but we do know Erib has helped a lot of ladies, and it is very feirce, I was told at the start to pace myself, that tiredness would overwhelm me, that id be more prone to infections, so it is possible one would have yukky feelings.
you are in my thoughts, lots of love and huggy kisses to you.
Moijanxx
Thanks moijan yes .thats what I need something that works.thankyou.love Sharon.
Sharon, this is quite interesting reading
Moijanxx
Hi moijan yes quite a positive read.thankyou. sharon
Hi Helen, let us know what the doc says, but i think my dizzyness iscosi had a glass of wine yest, then. Sleeping tab after…think thats why! Sobe careful.xx
i have messgaed you both today, but maybe you cantsee them?
anyway…oh, id had 3 failures…my onc said that was why im now eligible for erib.
moijanxx
Hi moijan and Helen.I think the system goes off sometimes for messages…anyway…I had MX and fec and radiotherapy in 2004…and five years tamoxifen…them it returned I don’t know when as I never had any scans and had no symtoms…i got tummy pains in 2013 but was told it was not c.by a consultant…i went back after 6months different cons sent me for ct and bones and then I went on capecitabine and bone meds…that worked for over a year.then I had letrozole.for ten months .then liver Mets appeared and I had docetaxol x6…finished end march with a partial response.then hormone examestane for 4months.and now this erubulin…i dont think I understand my ocologist as before she til me I had a slow growing cancer.but doesn’t seem to be now…so fingers crossed for good results.iv got a specialist oncology meeting at hospital on weds.so armed with all my info I hope to come to a better understanding…the McMillan nurse arranged it for me .apparently there’s two at the hospital iv never been told about it.theres a surprise ? …if my scan was showing progression on july15th…why didn’t someone tell me.i took myself to ae on 22nd August …xx anyway rant over
Always get more emotional at night.iv been on sleeping tabs for 3years…love Sharon.xx
Hi Sharon,
so sorry about all the c**k ups …makes you very insecure about the health service in general.
Life is a bitch at times!
see if you can Try to ‘pause’ the anxious button, if you can, just Till you find out just in what way theyve messed up!
I try techniques like…“…well, if its bad news on Wednesday, ive obviously been living with it, so nothing new then, we just need to tackle it”
Sometimes, I can. Bargain with muself,to save the worry till a certain specified time. But the monkeys often jump…strangely im often more anxious about minor stuff (like ports bring put in! Very weird.)
my primary cancer was missed the year before and I still have the leter saying 'you will be pleased to jear that…" And suppose I should have complained, but I needed the energy to fight the bc.
hope you get a good nights slerp and remember the Eribulin is on your side!
love Moijanxx
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Moijan they missed my primary cancer four times.i did get a solicitor but when I had the chemo fec I let it all drop…like you said I needed my energy for myself…i have very little faith in nhs.but have no choice but to stay with them…
Sharon, thats dreadful. So sorry.
When I was diagnosed a year later, I asked the surgeon about why it had been missed( quite politely) and he got angry and started shouting at me. felt Icouldnt stay with him after that and spoke to my gp about changing surgeons and managed to move hospitals, which helped. ( that surgeon was a good surgeon but very bad at patient /customen care, I discovered later from several of fellow patients)
is a change or a second opinion an option for you?
lots of love Moijanxx
Hi yes I changed breast consultant…years ago…but nowadays I dont see that unit at all just oncology.sharon.xxx…
I dont feel I need a second opinion now…i dont even go to breast screening any more.as had a mx …and really wdnt change anything if ever came in other breast.as have extensive bone Mets.liver Mets and peritoneal…find out tomorrow if there’s more that theyv kept back from.me.going armed with scans to see palliative care dr.xx❤
Hi Sharon, Helen and all Eribulin ladies.
just want to say…I saw my onc this am and things are going well on Eribuln. I get the impression Eribulin is a pretty good drug, so do try and persevere if you can …xx
my tumour markers are still falling…they have fallen by 735 since I have been on it…since end if June…and the lowest they have been during the past 16 months!
i had quite a chat with the onc, asked if, should the bc ever get under control, might i be able to go back onto oral chemo and he said its possible!
so ladies, just tread water till you know how well its working…if you can, depending on s/e
.Moijanxx
Sharon, are you feeling any better physically? I think ive been depressed on the Erib, can you take anyone along with you tomorrow? Someone to stand firm by your side?
i have been crossing my fingers, toes, legs and eyes, that your results and progress will be improved.
much love and hugs
moijanxxx
Hi did post on bone Mets.but here goes…came up about ct report of lung Mets to see specialist oncologist.who was lovely…my stomach had swollen up again over last few days.so she’s kept me in for a drain
Probably tomorrow…and the lung Mets was a typing error❕ …so no lung Mets…but been put on proper ward didn’t have to go ae route…and I have my own room.hopefully get more info’s tomorrow xafter all bloods checked.xxlove Sharon.moijan glad you well done for getting markers down…im hoping they keep me on it as it should be Friday.xx…god they asked me if I wanted to sign a do not resusitate form.freaked me and hubby out.i said no not at the moment.? xxshsron
Sharon, sorry, I missed your post earlier as was looking in the wrong board. These hospitals…they are really overdoing these consent forms arent they?!!
Sharon, hold on to the fact that the NHS has a bad press at present. Hospital staff are falling over themselves to get stuff right…fill in all the forms so they cant be criticised! Not sure which hosp you are in, but general hosps often dont handle things well.
And i must say that my hosp calls what we have, ‘chronic cancer’ so they truly understand our situ…not like a general hosp who have all and sundry to deal with.
also hold on to the fact you have been having treatment and hopefully it will make a difference…you have had this situ before, not new to you. Every time I get cellulitis, i fear ive got necrotising fasciitis…we cant help gong to worst case scenario.xxx keep us posted
love and hugs Moijanxx?????
Helen, why shouldnt you get better results soon, ? I wasnt expecting to and am pleasantly surprised.
eribulin ,
i think does affect the mood, so that colours everything. Hold fast.
Im goimg for the big vein hunt tomorrow myself at threeish so will possibly be less ebullient!
take care,
Love and hugs,
Moijanxx
Yes am on middle dose and its working…thats a good ideaxx