Simply Hello

[Barnetaccounts]

Hi all,

I have been following peoples posts and just generally getting the feel for the type of forum this is. I am encouraged that everybody is so supportive of both the sufferers and the partners, so I commend all of you.

Who would have thought that there would be a little "Liver" community out here on the interweb.

A little bit about myself, I am 56 years old and have primary liver cancer (HCC), along with cirrhosis. I was first diagnosed in Mar 14 and had a resection to remove the offending tumor. At this point I was told to be under no illusion that the cancer would return, and if I wanted to live just a tad longer I had to lose a lot of weight (about 8 stone) to meet the transplant criteria. The surgeon actually told me and I quote " the only place your liver should be is in a bucket".

Mar 15 I had lost the weight, and as predicted the cancer returned. I have been on the transplant list since last May, and the waiting is the only thing I struggle with. My care has been brilliant, but not knowing when or if the call is going to come can drive me mad at times.

When the cancer returned I took the decision that this wasn't something I wanted to keep a secret, so I started a blog about my journey through cancer and my time on the list (so far). If anyone is interested iot can be found at 1liver1life.wordpress.com and I update it regularly and have a readership from all over the world.

I am in the best shape of my life, my liver is functioning well, (what would a surgeon know), I think I am confounding my hepatologist, and although the transplant is inevitable, I don't think I am a priority whilst the cancer is managed.

That said, the phone will probably ring tonight, and off I will be.

Keep up the sterling work, and if anybody needs help and advice about alcohol, alcoholism, I may be in a position to help and guide. I haven't had a drink for over 13 years, and can quite comfortably say that AA, not only showed me that there could be life without alcohol, that in fact life without alcohol for this alcoholic is actually pretty cool.

BA

[Bolly]

Welcome to the site and congratulations on your last year of looking after yourself so much better. Sorry your cancer returned and has left you waiting for a transplant. I presume these 10 months your health has remained relatively stable?

I have been luckier I guess in that my HCC tumour which was not due to alcohol nor to being overweight was removed by resection 5 years ago and in spite of the surgeon saying he would "see me again" he hasn't, lol! PS I'm 58.

Thank you for the link to your blog.

[briccolone]

excellent post and welcome

[liveronmymind]

Hello and Welcome!

Your story is amazing so far! I do hope though that your liver will soon end up "in the bucket" where the surgeon said it should be!

Personally I don't think you should hang around think with HCC and I should hope that having it 'managed' wouldnt make you any less of a priority.

May I ask as to the way you are at present managing the HCC?

None the less a "brand new liver" would be the gift of a lifetime!

Hope you do get the call soon - (although isn't it sad to think that for that to happen some family somewhere will be plunged into grief) ........

Anyway, thank you for your input and help (I'm going to go now and read your blog!)

Regards,,

[liveronmymind]

Just reading your blog - ( starting from the beginning) I had to come back here to say what a lovely sense of humour and I love your good natured real way of writing and how you describe all your emotions ( i can relate to so much already) - Thank you for writing it!

This is brilliant entertaining reading! and yes those bedpans do seem to be giant egg boxes without the egg compartment bits!

This blog is hilarious! Quote "That’s pretty much where my head has been, so firmly stuffed up my own a**e, that I could have examined my own liver and given everyone a detailed blow by blow account of how last nights dinner was moving through.

I thouroughly recommend this Blog to absolutely everyone!

QUOTE "Give your loved ones a hug, and a kiss, have a cuddle, have a dance, this is not a dress rehearsal. This is the only chance we will get to live this life, so enjoy it, and remember to let your face know you are enjoying yourself. In other words SMILE."

QUOTE "Tonight, if your parents one or both are still alive, give them a hug and a kiss, and if they are living further away, give them a call, and tell them how much you love them. One day they won’t be there and that opportunity will never again present itself. If you have young ones, enjoy them, kiss them, make them laugh. We do one thing and one thing only as we move through this life, we create memories. My mum definitely did that."

QUOTE "Thanks for being part of this journey, the support really helps"

(Hope you will get the Call tonight) I really really do.

[Hidden]

Hello! I just wanted to say that I admire your truth and honesty.

I love everything about this site, the people and my husband really are the wind beneath my wings.

Welcome!

X x

[cityman62]

Welcome to the best badass forum on the internet re: liver issues,this is where its at-for sure.

[Raksha1964]

Welcome, you are doing amazing job of keeping yourself as well as possible. Am going to read your blog later which really looking forward to

[Brummi]

Hi, You sound a very positive person that's a great feeling to have. Yes this is a excellent site. Good luck and I hope you have all the help and live a long happy life..

[Barnetaccounts]

Thanks everyone for the lovely warm welcome. I really didn't expect anything less. This forum has been mentioned (not by name), as I am not up to speed with the exact protocol, in my latest blog. Mostly because of a sense of comradeship, which I have only ever experienced in one other place AA. There is something incredibly good about having a place to come to where you don't need to explain yourself, over and over again. That place where joined together by a common goal, and understanding you can help each other. The medical journey we endure is fraught with misunderstandings, misconceptions and at times disinformation. What better place than this forum to find out from people who can put things in laymans terms, and debunk the odd myth.

I look forward to contributing on a regular basis and should anyone wish to read my next batch of drivel please go to 1liver1life.wordpress.com

[Jahida]

Hello and welcome. I hope you get your call soon! I will be following your blog. I have read a few posts already.

I also write a blog. transplant mum.blogspot.com

I really hope you get your call soon!

[Hidden]

Dear Barnetaccounts and all who have replied

I have spent the morning reading through two NICE guideline consultations and reviewing a support application to the Scottish govt and was feeling a bit jaded when I stopped to see what's happening on here

I have to say you have all made my day and reminded me just why we set up this online forum - I am so pleased it works for you.

Reading all your comments has been a real reminder for me of why I'm so lucky to be doing the work I do and how there's still so much more to be done about all aspects of liver health

Thanks and best wishes

Andrew

CEO of the British Liver Trust