Hi, newbie sneaking in.

[tine]

Hi all, I am caring (medical appointments as mum will not tell the doctors the truth and leaves out important details)for my mum who has primary liver cancer, it is such a maze and feel really bad when I want to complain. Mum was dx in April 2011 and had chemo and beads nothing worked, is on sonafib and that has not worked, was only given to september 2011 but mum is really well, that is the confusing part of this disease, the uncertainty. I have the problem of mum not wanting people to know she is sick, so I email family members with all mums updates, she will not take her scripts to her chemist, I need to take them to the hospital so her chemist will not know she has cancer. mum is only 70 years old and was really active but the symptoms from her drugs have made her house bound which is really sad. sounding like a whinger at the moment, but the uncertainty of this journey sucks.

[wombat4]

Its really good that your mum is well, and that she has gone past sept 2011. Nobody asks to go on this journey, something touches us and we are in it through no fault of our own, thats the sufferer, carers and families. My wife would tell people she had cancer, if they asked, but I was the only one to know how advanced it was, because I was at all appointments with her and read all the blood tests and scan reports. She went into hospital on a friday because of fluid retention,( liver failure )and died early the next wednesday, and boy was it a surprise to everyone, even her mother did not know how serious it really was, the most common thing said was "I did not know she was so ill". So what I am saying is the more honest and upfront this all is, makes the journey a bit easier for those that are left behind.Secrecy for whatever motives is not good. In the long run it can make thigs worse The uncertainty of whats going to happen and when is a nightmare,it used to get into all of my thoughts. This cancer business sucks. Good luck wombat4

[tine]

thanks for your reply, could I ask did your wife have liver cancer?

[wombat4]

Hi Newbie, No not liver cancer, it was colorectal cancer as a primary that set up secondaries in her liver and started to spread from there.They would not operate on the secondaries as the largest one 118mm was wrapped around the main artery, and they will not consider a liver transplant if the cancer is also outside the liver. She did the national screening test for bowel cancer that came back clear the previous year to the dx, when she was dx, it was so advanced, she must have had the primary at the time of the screen, must have been a faulty batch. It cost her, her life and me, I lost my best mate of 40 yrs The end came when her liver could not function properly, and the fluid retention was a result of that. Good Luck. wombat4

[SILLY]

It seems to me you are doing the best thing for the family . At least the family know . It is difficult to know what to do about friends .Your mum has the right to decide whom to tell but I agree that she has made a " wrong "decision. I don't know what I would do in your situation. I suppose you have tried to tell her that her friends would care and would be happy to visit her and enjoy her company .

[tine]

thanks for your thoughts, todays drama was mum doesn't want the pallative care nurse to attend (15 minutes every 2 weeks)as it reminds her that she is not well, I have called the community nurse centre and will chat directly to the nurse that visits my mum. At the moment as I have said you wouldn't know my mum was ill and she is able to get around and care for herself etc, but it seems that with the side effects of the medications she is on, she perfers to stay at home which I undersatnd but I also think she is missing so much. Sorry all but feeling like a whinger.

[tine]

thanks for your thoughts, todays drama was mum doesn't want the pallative care nurse to attend (15 minutes every 2 weeks)as it reminds her that she is not well, I have called the community nurse centre and will chat directly to the nurse that visits my mum. At the moment as I have said you wouldn't know my mum was ill and she is able to get around and care for herself etc, but it seems that with the side effects of the medications she is on, she perfers to stay at home which I undersatnd but I also think she is missing so much. Sorry all but feeling like a whinger.

[SILLY]

I just want to add that you don't sound like a whinger.

[purpleangels]

You are so not a whinger....... It is so hard..... And there are no answers..... Just emotions and pain and suffering.....but there is also this commu it's to talk to and seek support from. Hope things improve! Take it easy on yourself too..... PA

[tine]

Hi as I have said I am new to this site just wondering if others get the emails about wonder cures sent through this site, directly to their private email address?