British Liver Trust
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How do you handle the unknown and uncertainty?

So I am 54yrs old my youngest is 13yrs old. I have cirrhosis and being monitored for HCC. As some lesions are LRad 3-?4. I have had 2 pints of beer my entire life but have had a fatty liver first signs when I was about 19. Always was told just fatty liver. So I know no cure but my symptoms are there. I worry just waiting for my liver to fail completely. I am eating right exercising etc. just worry about the future. How do you deal with it?

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Wish I could tell you. It is the unknown. But many people on this site have wonderful things to say about coping. Good luck and take care

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Dear Mary,

I am so sorry to hear about your liver disease worsening. A wonderful friend of mine called 'Cibble' posted some brilliant posts about HCC. It is worth searching her posts as I think they will be helpful.

What does your consultant say?

Wishing you all the best,

Pear

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Thanks , I go back to the consultant on the 17th-ish

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Fortunately I managed to avoid developing either HCC or CCC before getting my transplant. However, there are some similarities we faced.

For me preparing mentally for what could happen was really useful. That's not thinking and worrying about it, its more preparing for what to expect. I did a lot of research into the potential outcomes, what the course of the disease could be and what the general protocols were in dealing with it. In doing so taking a good view on what was most likely to occur and not worrying too much about the things that could occur but were very unlikely to do so. Its all too easy to get really sidetracked by the negative outcomes, so its important in doing any research to get a balanced understanding and focus on finding the positive possibilities.

I sort of have a bit of a personal philosophy. Don't worry about things you can't change. Just deal with those that you can. Ok, it may not be for everyone, but it works for me.

I was asked by a colleague whether at any stage was i scared. I answered no because i was always aware that i still had options, whilst there were options available i knew there was always a chance of a positive outcome. Although, i must admit, when things were a bit touch and go I was away with the fairies so had absolutely no comprehension as to how serious things actually were at that time. So didn't really get chance to worry about those.

I also think that keeping a positive outlook can be a good coping mechanism. Not just for you but also for those close to you.

Hope that's at least informative even if its not very helpful.

Best wishes and good luck.

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Thank you , your reply is very helpful. I will continue to research this illness and options.

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Hi I’ve got cirrhosis and it’s a case of eating well, high protein and carbs, keep an eye on the salt (try to avoid ready meals) exercise and rest and just take it one day at a time. Are you on the transplant list? Do you know your CPS and UKELD scores?

Good luck

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Hi, I’ve got HCC and was in for an attempted transplant in Nov 16 after being 18 months on the list. Unfortunately I haemorrhaged and the procedure was aborted, I spent 12 days in a coma and my family were told “the end is nigh”. Well 14 months later I am still here and confounding the medics. I have regular ablations 3/4 times a year and have so far had 9 procedures. The greatest tool in your box is a positive mental attitude, although pretty much impossible 24/7, avoiding sitting on my pity potty enables me to get by with the minimum of fuss. Do not be frightened to ask people on this forum or your medics to explain things you don’t understand. The best thing I did was began to write about my cancer journey through a blog 1liver1life.wordpress.com which enables me to get my feelings both good and bad out there. I was determined that cancer was not going to define me. I listen when I am being told things and ready to question anything that doesn’t make sense. Avoiding Dr Google is another great piece of advice, as if you are anything like me, I can get a headache and after a few minutes of searching for “cause and effect” I have a brain tumour and will be dead before Eastenders has finished. Please read my blog you will have lots of identification, hopefully it will make you smile, and be grateful that medical science keeps moving on so fast, that things really have to get bad before the help can’t help anymore. I wish you well and please ask away, there is no such thing as a stupid question.

Ray

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Brilliant!

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Take care and my thoughts are with you.

Gx

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I was diagnosed with liver cancer almost 10 years ago when I was 35. My children were 14 & 10 at the time.

It's not been easy as I've had numerous surgeries and procedures. I'm still scanned regularly and always will be but for me now I guess it's just a way of life.

I live a normal life and looking at me you wouldn't know I'd been ill :)

It does get slightly easier over time.

Best wishes to you and if you have any questions I'd be happy to answer them.

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You are a remarkable lady.

Please take care. Lots of love Lynne xxxx

Ps I have Nash with fibrosis, fibromyalgia and other things too. Your positive attitude is a great way to be.

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