My Liver Is Killing Me

For those wanting to share with others living with secondary or metastatic breast cancer.
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INTHEPINK
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Re: My Liver Is Killing Me

Postby INTHEPINK » Sat Oct 03, 2015 7:03 pm

Thank you all SO much for your lovely replies. I have started the ball rolling by asking my Super to send me the forms I need. I also put my resignation letter on my bosses desk on Friday (and then ran away before he opened it!). I have worked there for 11 years and have a lovely boss and really enjoy my job so facing him again on Tuesday is going to be very hard. :sniff:
Thanks Judy for the advice about Centrelink. The worse thing that can happen if we go and see them is nothing so we might as well give it a go and see if they can help at all.
Christine, I so admire your strength! 3 months is short, I can't imagine being told 3 weeks!!! I am encouraged by you and will PM you later about FB.
We told our son the other day. He is sad but since I have had cancer for more than half his life I think (15 years)he is used to the ongoing regression or just thinks it will never actually happen.
Next I am going to organize my funeral ..... basically I want to get all the hard things out the way so I can live till I die.
I go for my CT on Wednesday next week and that will give me a better idea of 3 or 6 months. I suppose I do struggle with constantly feeling yuk from the chemo and after loosing my hair three times and 6 different rounds of chemo I do sometimes wonder if we try too hard in vague hope something will work. But I suppose what is good is extra time with my DH and son - as long as i don't become a burdon or drive them nuts. :ouch:
Thanks girls, will keep you posted.
Jane.
“What day is it?" It's today," squeaked Piglet. My favourite day," said Pooh.”

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Re: My Liver Is Killing Me

Postby CarolynLee » Fri Oct 02, 2015 1:43 pm

Jane, I don't know what to say, have no advice to give, all I can say is I'm so sorry, and hope that the doctors are wrong and they can find something that can help you. It sucks and it's not fair - and the sooner a cure is found the better.

Sending love and a big hug :heart:

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Re: My Liver Is Killing Me

Postby chrismelb » Fri Oct 02, 2015 12:35 pm

Jane i am glad my posts have helped. I was told basically i could die in three weeks cos i was in liver failure and my old onc had never seen anyone recover from those numbers, i was dying BUT TDM-1 saved my life by about three days i reckon. I also think that if i hadn't paid $3840 for the drug already they wouldn't have given it to me. So many ifs and buts and just plain luck. My current onc thinks i recovered cos i was pretty fit and healthy. I really never felt like i was dying at all.
So dear Jane, there are so many variables. I think once you retire and can really live yr life for you, you will have more energy. I take my hat off to you for working all this time.
Get your super out NOW as it is so easy to do as your onc will not hesitate. I actually had a financial person(with an interest in breast cancer) help me with mine so i really shouldn't say it was easy!! The social worker at your treating hospital would be a good help. Also the Cancer Council have financial advisors who do free work for us.
Good info from Judy re Centrelink. I would go and see them with your hubby and they will tell you what they can do. There may be a waiting period but they will help and back pay if you are in the financial situation where they can help. Please be patient as it can be really frustrating. I would ring the help line and get an appointment where they will tell you what documents to take. Don't let someone put you off on the phone or at the desk cos they don't know everything.
Would you like to join the ABC Facebook page for support and maybe suggestions? Lots of us have dodgy livers!! Just PM me and i will sort out for you. Unless I have already done it?!
If you were in Melbourne i would suggest you go to Peter Mac as they have the most up to date stuff and might have some good options for you.
Take care Jane and stay in touch xo
Dx 9/03 EBC
5/12 ABC bones-Herceptin,Tamox&Zometa
8/12 Liver mets-Abraxane,Herceptin&Zometa
6/13 Xeloda/Tykerb Xgeva
11/14 TDM1 Xgeva
1/15 Rads to tumour in head
2/16 Whole brain rads lepto. mets, continue TDM1
8/16. Navelbine, Herceptin
1/17 Neratanib Xeloda & Herceptin.

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Re: My Liver Is Killing Me

Postby JudyB » Thu Oct 01, 2015 11:41 pm

Jane I am sorry to hear this and can't even begin to imagine what it must be like to receive such a prognosis. As to the carer's allowance I believe there are two. One is called Carer's Allowance and the other is a Carer's Payment I think. The difference is that one is larger and means tested so if your husband is staying at work then he may not be eligible for it but the other is a smaller amount and is not means tested. To receive this one he will have to answer a questionnaire and I believe the questions are along the lines of how much help you need, ie are you capable of organising your own medication, do you need help getting to your appointments and how much help do you need each day. I don't know any more about the questions. My friend received this allowance even though he was in full time work. However his wife didn't work and he did do a lot for her.

Best of luck, I hope you can get financial assistance, I know how difficult it is when you are married, it really isn't fair. You should be able to access your superannuation though and if you choose to go along those lines you need to act quickly as it can take some time.

:hugs:
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Re: My Liver Is Killing Me

Postby Tigger » Thu Oct 01, 2015 10:44 pm

That totally sucks :( Even though I am currently on the same path and you never know what is around the corner - good or bad - I don't have a time limit at this point.

I had no trouble getting a disability pension but I am separated from my husband so my income is essentially only the mainenance he pays for our kids. With metastatic cancer it is a tick the box situation so the forms are easy. Whether you get a payment will depend on your husband's income. There is no doubt that you will qualify medically. I hope you can make some awesome memories and also that a miracle cure surfaces for you. :hugs:

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Re: My Liver Is Killing Me

Postby The new girl » Wed Sep 30, 2015 7:47 pm

:hugs: :hugs: sending you hugs jane,sorry to hear that news and so hard to have to think about everything else....rosa

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Re: My Liver Is Killing Me

Postby Janette » Wed Sep 30, 2015 7:30 pm

Oh Jane,
Not an easy thing to hear. If you enjoy every day, and take control of what you can control, that's all you can do. I hope the prediction is way off and you have much longer. :hugs:
Janette


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Re: My Liver Is Killing Me

Postby ruth1 » Wed Sep 30, 2015 1:38 pm

Jane, I have no clue what to say to you except that it is a dreadful horrible thing to reach this point - I am soooo sad for you and cant imagine where your head is at. I hope you can find your way through the paperwork stuff and get to find a way to have some quality of life. When time is so precious but treatment is still happening its not easy. Leave work and make some memories with family and friends. :hugs:
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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My Liver Is Killing Me

Postby INTHEPINK » Wed Sep 30, 2015 12:38 pm

Hi Girls,
I know I seldom post on this site but am always checking all the posts. I have been so interested in your posts Christine and how well you are managing. Nice to know that the MRI is better. I went to the ONC last Monday and was given a diagnosis of 3 - 6 Months. If the chemo I am on works it will be closer to 6 months, if not then just 3. Odd that might not see Christmas. As you can imagine, this was such a shock! :crybaby:
As I still work, I am now sorting out my resignation but my boss is away, figuring how to live without my salary whilst my DH finds out about getting his long service leave. We have decided to try and "retire" whilst we have the chance and just enjoy each others company while we can.
My heart is heavy and I can't imagine leaving my DH and my son.
If anyone has tips on help that I can access or have any idea about the test for a carers allowance or any thing at all, please let me know.
Thanks heaps, it's so good to have this site and know that I am not alone in to ABC journey.
Jane.
“What day is it?" It's today," squeaked Piglet. My favourite day," said Pooh.”


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