After what seemed like the longest week of my life,the wait was finally over and i walked into the clinic to see the consultant.First of all I was checked out by the registrar who wanted to know if the drain had had stopped draining ,it hadnt so they said it would have to stay in for at least another week.At this stage it was the least of my worries and i was impatient to see the consultant.
The consultant finally came in.once again he said how sorry he was,but he reitterated that he was sure that he had got it all but that I was being referred to an Oncologist at my local hospital who would decide if i needed Chemo.He also told me that it was primary liver cancer and that it hadnt spread from elsewhere(which was a great relief).he told me primary liver cancer is very rare especially in someone my age who has no previous liver damage i.e i dont have Hepatatis and I dont drink.
The consultant told me I dont have regular liver cancer,I have Fibrolamellar Hepatic Carcinoma which has a much better prognosis.Its usually found in people a lot younger than me(which is possibly why it was misdiagnosed).There is less than 200 people a year in the world diagnosed with it.There is no cure and the main treatment is a liver resection which luckily i had the month before.I have been told that i will have to have scans for the rest of my life and if it comes back(it has a very high reoccurance rate between 54 - 100% depending on which website you read) it can be lasered off before it gets too big so hopefully i wont have to have another liver resection.
I left the room feeling a lot happier.I wasnt too happy with the thought that I would have to see an oncologist but at least they thought that they had removed it all.
I got home and decided it was time to tell the kids,they took it very well.They asked questions and i answered them as best I could.I told my oldest daughter to please not look it up on the internet as i didnt want her scaring herself.(at this point I still hadnt looked it up,it took me over a month to even type it in to a search engine).
I spent the next few weeks at home recovering from the op,I saw the consultant once a week for 4 weeks where he would check my drain.He said the maximum I could have it in for was 6 weeks and if it hadnt stopped draining then he would have to fit a shunt.
I finally had it removed,it hadnt quite stopped draining but the amount coming out was so small that he was sure it would be ok.
It was so nice not to have that thing hanging from me or strapped to my leg(the kids used to freak out when they came into the bathroom and my bag of bile was hanging over the side of the bath).I went shopping and out to lunch with my best friend to celebrate having it removed.When I got home later that day I lifted up my shirt to show the kids that It had been removed.but because my stomach was still numb from the operation i hadnt realised that bile had been leaking out all day and was now pouring out at quite a steady rate.My stomach was also becoming very irrated as the bile was very acidic.
As it was 5.30 on a friday night i thought i should go to the GP to see what i should do.I saw a different GP to the one i usually see.i lifted my shirt to show her and she asked me what it was!!! Luckily i was still under the care of the District nurses who came round and attached a bag to catch the bile.I was hoping it would stop once the hole where the drain had been had healed over,but of course nothings ever that simple!!!
To be continued....
