Waiting on my mum's diagnosis but not sure if she is telling me everything

Hi, buckle up, this is long and complex. I'm here because I've got no-one to talk this through with really and need to make sense of it all. My mum is in her 60s and has been unwell for quite some time  - fainting, vomiting, weight loss, constant viruses and colds, personality changes, probably more - but wouldn't go to the doctors. She was rushed into hospital 4 weeks ago with a swollen and painful appendix and ended up having a CAT scan. She told me they had found a 2cm tumour on her stomach, and she had an MRI last week, but she let it slip the MRI was for her liver not stomach. 

She has now admitted to me she has been diagnosed with cirrhosis of the liver and the lesion is on her liver and is 5cm. Her symptoms fit quite advanced cirrhosis. She has been a heavy drinker for years, but not to stereotypical alchoholic level, so I can understand she is probably feeling ashamed due to the stigma cirrhosis carries, and she told me that she told the doctors she barely drinks so they have diagnosed her with non-alcholic cirrhosis and suggested she keeps her alcholol intake to a minimum. I've asked her if there is anything on her stomach and she changes the subject. She hasn't told anyone else the truth - not even her husband (who drinks daily and even more heavily).

She has told me they do not know if the lesion is cancerous yet, or if it's secondary or primary at this stage, and have not told her how advanced her cirrhosis is, and she will have to wait for 4 weeks for an appointment with a consultant to discuss next steps. This wait is driving me crazy, made worse by the fact I am an only child and want to respect her wishes and not speak with anyone else in the family about the truth of what is going on - I'm spending most of my time on Google trying to fill in the gaps, not even knowing if she has told me the whole truth. She has agreed I can go to her next inperson appointment to support her and ask questions as she is suffering with confusion, but I get the feeling she won't even tell me when it is.

I feel angry and scared and alone. I don't trust what she has told me and have a horrible feeling things are worse than she is telling me because I can't believe they would move so slowly on this as she is in a lot of pain and can bareloy eat. I feel really guilty for feeling these emotions and not trusting her, and every day feels like a week because I jus want some clarity so I know what I need to do to support her.

Parents
  • Sorry, I don't know where my post went. I'll try again.

    Please get in touch with The British Liver Trust. They are fantastic, you can call the nurse helpline between 10am & 3.30pm or up to 3pm on a Friday.

    They are genuine, confidential, kind and non judgemental with positive, sincere help and advice. 

    You can find them on google or a site called HealthUnlocked. 

    I feel you will get more information about liver disease & possible liver cancer. It sounds like your mum has Hepatic Encephalopathy.. along with other issues. The nurses on British Liver Trust will take all the time you need to understand more, along with posts on here.  You are very brave, look after yourself too xx 

    The British Liver Trust  0800 652 7330 I hope this is still their number. If not it will be on their website.

Reply
  • Sorry, I don't know where my post went. I'll try again.

    Please get in touch with The British Liver Trust. They are fantastic, you can call the nurse helpline between 10am & 3.30pm or up to 3pm on a Friday.

    They are genuine, confidential, kind and non judgemental with positive, sincere help and advice. 

    You can find them on google or a site called HealthUnlocked. 

    I feel you will get more information about liver disease & possible liver cancer. It sounds like your mum has Hepatic Encephalopathy.. along with other issues. The nurses on British Liver Trust will take all the time you need to understand more, along with posts on here.  You are very brave, look after yourself too xx 

    The British Liver Trust  0800 652 7330 I hope this is still their number. If not it will be on their website.

Children
  • Hi Annie, thanks so much for your post and kind words. I'm doing my best to look after myself - I've confided in a friend and am trying to do some breathing exercises and yoga rather than Googling constantly and worrying about unknowns.

    My mum has just called me and said she is on her way to the GP surgery and the tumour is going to be removed ASAP, so I'm very relieved things are moving along now and hopefully soon I'll be able to fill all these gaps in I've been panicking about. I'll definitely get in touch with the nurses at The Liver Trust as well - I've already had a look around the support forum on Health Unlocked. 

    Thanks so much again,

    K