essgirl36's blog

Why do i feel like a hypochrondiac??

2010-03-07T19:43:22Z

I was misdiagnosed in April 2008 (was told I had a benign liver tumour)but after having it removed in September 2008 i was told it was actually liver cancer. I have had a few issues since then the main one being a bile leak which lead to sepsis and quite a few more hospital stays.

I went to the Gp last week(for the first time in about 6 months)and i got the feeling i was being a bit of a nuisance.I pulled a muscle in my chest(felt like i was having a heart attack and was having trouble breathing)he gave me some codeine and sent me on my way.Hes also ordered some blood tests andI have to go back for the results on Tuesday.

However last night I noticed a lump at the top of my leg,I dont know whether to mention it to him(if he rolls his eyes at me again im gonna knock him out this time lol) or I dont know whether to leave it for a couple of weeks and hope it goes away.Im having a smear test in a couple of weeks so I may have the nurse check it out then.

The sensible part of me says i should tell the Dr on Tuesday,but im scared I will end up back in hospital just when I feel im starting to get back to normal.

Part 4

2010-02-19T23:07:33Z

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....

Part 3 (Im on a roll tonight!!)

2010-02-18T22:26:50Z

So off i go to the hospital bright and early on a Monday morning.I had the op done,I was in the operating room for 6 hours which was quite a bit longer than it was supposed to be but i was just grateful that it was over.I was told that i would have tubes coming from everywhere after the op so I decided that I didnt want the kids to see me like that so I they didnt come to see me till the next day(I thought i looked ok by this point but a few weeks later they told me i looked like one of the Simpsons as my skin was so yellow!).

Stayed in hospital for a few days,was supposed to be in a lot longer but as im sure some of you will agree a hospital is no place to be when you feel ill,all i wanted to do was sleep!!

Day 10 after the op i went to my GP to get my staples removed,I had been complaining that I didnt feel well and that I was really hot,but they didnt really take a lot of notice of me until the nurse dropped the staples that she had removed onto my stomach,as she went to pick them up she remarked how how I felt(Yeah no s*** I thought).She goes off to get the Dr who comes to see me and decided that my incision is infected and that i should go back to the hospital and get some Antibiotics and possibly have the incision re-sewn.

The Gp told me I could go to the hospital where i had my op or i could go to the local hospital.I decided that I would go to the local hospital as hopefully i would only be there for a couple of hours.So off i went where I sat for four hours getting hotter and more irrate by the second.

I finally saw a Dr who told me my incision was fine but that I had a bile leak which had been leaking since the op,and that it had now turned into sepsis.I was told I would have to stay in and they would insert a drain.As this was Friday night this wouldnt be done until Monday morning.I told them ok then I would come back in on Monday morning.I was then told if i went home I would probably die tonight,I decided that was a better option than spending a weekend in hospital(I dont know what i was thinking at this point!!!) so i signed my self out even after 4 Drs telling me what would happen if I left.Luckily I came to my senses( remember its a womans perogative to change her mind).

Spent another 5 days in hospital,finally had my drain fitted on the Tuesday cos they forget about me on the Monday!! Went home on the Wednesday with drain strapped to my leg and strict instructions on emptying it and to make sure I measured the output.

I was due at the hospital 2 weeks later for my post op appointment so when the Consultants secretary called me and bought forward the appointment by a week i just thought he wanted to see me sooner because I had had the drain fitted.Oh how wrong was I!!!

I arrived for my appointment in a good mood,was feeling ok,could finally stand up straight after being hunched over like the hunchback for the last 5 weeks.I was also hoping that he would remove the drain.

First I saw the Registrar who asked me how i was blah blah blah.Then the Consultant came in with the nurse and they asked me was i on my own,I said no my best friend was with me out in the waiting room.They asked did i want her to come in,I said no I was fine!!!(I still had no clue even at this point)

Thats when he told me he had made a mistake and that the tumour was cancerous.All i remember him saying that he was very sorry but that he thought he had got it all.I then got up and walked out telling him that I had nothing to say to him.I was in shock when I walked out,My best friend was waiting for me and I just blurted it out to her "ive got cancer".She had lost both her parents a few years before within 18 months of each other so when I told her this she was probably in more shock than me.

The nurse made me an appointment to come back the next week to talk to the Consultant.I then spent the longest week of my life.I prepared a list of questions that I wanted to ask him but the hardest part of all was staying off the internet because I knew if I googled it I would scare the life out of myself.

In that week i blamed myself for putting off the op(never mind that I had nearly cancelled it),I was kicking myself for not having it done back in May.

I decided not to tell the kids or anyone else (except my brother) until after I had been back to see the consultant and to find out what the prognosis was.

To be continued

P.s I dont know if anyone is reading this but it feels good to actually write all this down.

Part 2

2010-02-18T21:23:14Z

Well after my close escape with the endoscopy,I got dressed and went to see the consultant.He told me that i had a benign liver tumour probably caused by being on the pill.He told me that it wouldnt turn cancerous,it wasnt likely to get much bigger and it wouldnt rupture. He said it wouldnt really cause me any problems so it was upto me if i wanted to have it removed.

He told me go home and research it on the net and come back in a couple of weeks and tell him if i wanted it removed.He explained that it was a major operation but the decision was upto me.

I went home(with a big smile on my face cos yeah i didnt have cancer).I researched it and decided to have it removed.My reason for this at this point was mainly cosmetic because i looked half pregnant.It was also starting to cause some discomfort and i was suffering from constant indegestion.which i was told was due to the lump growing near my stomach.

I went back to see the consultant 2 weeks later(this was the beginning of May) l and told him i had decided to have it removed.He said i could have it done whenever(basically there was no rush) we decided that i would have it done in September so the kids would be back in school and I wanted to take them away on holiday in summer.

So for the next 4 months life carried on as normal,I went to work almost every day,had a few days off with aches and pains but overall felt really well.I lost a few more pounds which made the lump stick out more.I also started to feel very tired and was in bed by 10 most nights but was generally feeling ok.

I went for my pre op in the middle of August.Had all the usual tests etc etc,they also went over the risks of the op and said there was about a 5% mortality rate.This shocked me because i had been told previously that it was only about 1-2%.

At this point i changed my mind,decided i would wait for the kids to be older and as the consultant had told me the op wasnt necessary i decided to not have it done.I cancelled my time off work,told my sis in law who was going to move in to look after the girls that i wouldnt be needing her after all(the only thing i didnt cancel was the op itself).Every one tried to change my mind but i was sure i was doing the right thing,as a single parent i decided that the kids needed me more than i needed to have the operation.

A few days before i was supposed to have the op(i still hadnt cancelled it at this point) i changed my mind again(well i am a woman and thats what we do!) so i re-booked my time off work and sorted out the kids, i even wrote a guide for my sis in law entitled the smooth running of essgirls house.I wrote down what the kids eat,when they go to bed,what they are allowed to do even to what day the rubbish goes out.So with all this done I went off to have my Liver resection.

To be continued......

Essgirls blog

2010-02-17T23:20:01Z

Hello I am a 37 year old female with 2 daughters aged 16 and 11.I joined this site last year and have been toying with the idea of writing a blog for a while now.I have been having a rough few weeks so I have finally decided to write it all down just to kind of get it off my chest.

February 2008 I noticed a large lump in my abdomen,I had lost a few pounds but had put this down to starting a new job,being busy with the kids etc etc.I remembered the first time I felt the lump I thought it was the just the way i was laying so i moved around then stood up but i could still feel it.I waited 3 days before going to the Dr because i just thought it would go away(dont know what i was thinking there lol)

I walked into see the Dr he asked what was wrong and i told him i had found a lump.He asked me where it was and asked me to lie down so he could examine it.I have always been fairly slim and when i lay down the lump was sticking out of my abdomen.He felt it then asked me a few questions how long had i had it,had i lost any weight etc etc.I could tell by his face that it wasnt good.He sent me to the local hospital to get blood tests done.I had the blood tests done within an hour of seeing my GP.

When i got home there was a message from another hospital asking me to call them about going for an ultrasound.The scan was booked for that afternoon,by this time i was petrified because it was all moving so fast.

I went for my scan that afternoon, they didnt tell me anything just said that yes there was a lump(i knew that without a scan because it stuck out so much).

A week later i was sent for a CT scan again they told me nothing except i would hear from my GP in the next week or so.A week later i got a call from my Gp telling me i needed to go for an MRI

I went for the MRI,i was in the scanner for over 2 hours by now i had convinced my self that it was really bad but still no one would tel me what they thought it was.Again i was told i would hear from my GP with the results.

A few days later i came home from work and checked my voicemail and there was a message from my GP asking me to call him.Unfortunatley it was now 6.30 so too late to call.I had a very long and restless night waiting to call him.The next morning i decided to go to see the GP instead of calling him but as i didnt have an appointment this was easier said than done.The receptionist was adamant i wasnt seeing him and i was adamnt i was.After about 5 minutes of arguing with her the DR came out and told her i didnt need an appointment and he would see me now.

He had the results of the CT and MRI which which stated i had a tumour on my liver but they wernt sure if it was benign or malignent.The Gp then said i was being referred to another hospital and that i would hear from them very soon.

I decided to put it out of my mind till i heard from the new hospital.My sister in law would call every night to ask had i heard anything and i would say no.She would tell me i needed to call them and ask what was going on but i told her "no news is good news",and i said i would just wait to hear from them.

This went on for about 3 weeks,al the time it was in the back of my mind but i just kept telling my self it couldnt be anything serious or i would have heard by now.

I finally heard from the hospital, a nurse called and told me they wanted me to go in for an endoscopy as that would give them a clearer picture of what the lump was.

The next week i set off for the hospital with my brother and sis in law as i was told i would be groggy afterwards and would need someone to take me home etc etc.I arrived at the hospital filled all the forms in and changed into a gown.I walked into the endscopy suite and sat on the table with my arm held out whilst the nurse prepared the needle for the sedation. before giving me the sedation the nurse checked my name and date of birth.The Dr who was sitting at a computer in the corner suddenly jumped up and asked the nurse why was i here,she told him he had said to book me in for an endoscopy he told her no he wanted to speak to me in clinic and that i didnt need an endoscopy.By this time im sitting there on the operating table bum hanging out of the gown they made me put on wondering what the heck was going on.

The Dr told me to go and get dressed and he would come and talk to me and tell me what was going on.His exact words to me were "I know what you have,you dont have Cancer" at this i just burst out crying with relief i was so happy to hear that.

to be continued......