Hi again all!
Thank you for all your kind & supportive comments, I even took myself off to a car boot sale (I know you guys across the pond call them something else but I can't remember at this moment!)at the farm next door yesterday. I drove, as it's about 500 yards, not far but too far yet when I'd have to walk round the field & then walk home. it was so good to just get out, on my own if only for half an hour or so.

Lainey, I have indeed worn much too yellow! I'm almost scared to wear it now in case it reflects on my face - like buttercup flowers!

Thanks Nancy, I think my sense of humour does get me through a lot - I think it's got even more 'black' lately - I was thinking of calling myself  'Dead Woman Talking'! Hope that doesn't offend anyone, I find I have to deal with all the horrors in this way or they'll take me over.

Charlotte, may you find a Greek God soon! Thank You.

Bob & Betsy, it's nice to have 2 others who know almost exactly how it is. The drinking (& continual trips to the bathroom!), the drainage bags, appetite problems, blah blah. I know our respective problems are all slightly different, but the effects are similar.
Bob, I truly hope you're recovering well from your surgery.

Betsy, oh Betsy, how I know the lethargy & inability after all the procedures. Can't tell you how much I'm looking forward to the next drain replacement....NOT!
I know it's horrible for you too but it is of comfort to know that there is someone else knowing how it is, although I think your ongoing problems are even worse than mine. Just one day at a time eh? It's about all you can do. Fistulas are the most awful things, I had one previously, nothing to do with this illness but another problem. It does seem to be sorted finally but I don't talk about that now for fear of raising the spectre again!

My surgeon doesn't want to do any more surgery either as I found out during the recent admission that I've had far more done than I knew - or frankly want to know! I must say the latest CT pictures were interesting, the Roux-en-Y loop is a most odd looking thing & I seem to have what i can only call a bionic bridge holding bits together.

I'm glad you're still making plans - I have some of them, I can't quite see that I'm going to be employable in the normal way again, only in things that I really don't want to do! Well, maybe I could be an extra on True Blood - I have suitable scars..... Keep on keeping on, are you still watching Eddie Izzard?

Thank you Julia & family & Laura, big smoofs & hugs all round! xxx

Hi All! Haven't been on the site for some time again, as is my usual way, I've been through the mill again & as the broadband only works when it thinks it will it's all been rather too much effort! I still think of you all often though.

I've been really jaundiced since Christmas & the longer it's gone on the worse I was feeling. The itching, the loss of appetite, blah blah, I'm sure there are plenty of you who know exactly what I'm saying! The surgeons/radiologists had real trouble trying to get it all under control.

I've had the bile drainage bag on, off, on again, unfortunately that was pretty much the cause of my latest crisis - I'm feeling extremely fortunate to have reached my 51st birthday on Good Friday- it was a very close call this time.

I had to put the bag back on about 5-6 weeks ago when the drain started backing up again & I kept waking up wet..... YUCK! The output kept increasing & as I was feelling so rough I took my eye off the ball, wasn't really drinking as much as I should have been, or eating as I would normally do, I had a really dreadful week, started vomiting, then didn't want to eat, long story short, 3 saturdays ago I collapsed, literally, was quite unable to move anything, I managed to get myself sitting on the floor lying against the bed.
My Mum called the ambulance and I think the first paramedic on the scene thought I was joking saying that I couldn't move. Eventually the second crew arrived & decided to load me up & cart me off to A&E in Plymouth.

I was dealt with really quickly & soon appeared on the scene a delightful doc from the ICU. She told me she was going to admit me to ICU, at which I declared I couldn't possibly be THAT ill! She kept loking at me in a very strange way while I kept talking & asking questions, like something wasn't quite right. My cousin Keith & his wife Kathryn had come along to lend support in the mean time so I've heard anything I didn't remember, which wasn't much to be honest.

I was in the Hi-Dependency satellite section of ICU as I didn't need ventilating & was in there for 5 days. Such wonderful people - they saved me without a doubt. I had gone into renal failure along with marked cardiac changes, my potassium was very high & all electrolites right up the shoot.

I was discharged into the liver unit, my favorite consultant hepatologist (Jon Mitchell) back in charge. He told me a few day later that my sodium level of 1.7 on admission was in fact 'incompatible with life' & I should have died, they really had no idea how I'd survived, let alone kept on talking & asking questions! I told him I was made of pretty tough stuff & not planning on going away anytime soon!

Fortunately my kidneys recovered to almost full function in about 4 days, no dialysis or other invasive stuff, other than the usual stuff in the jugular vein - I have the 'vampire' style scars as my badge of honour!

I've now been home about 10 days, most of my coordination seems to have recovered although I'm still slow at walking, I have stopped 'tacking' now. My hands seem to have stopped their tremors, which is good cos I kept knocking things over! I almost got stuck in the loo yesterday   whist at a good friend's 80th birthday party!There was nothing on the walls for me to haul myself up with - must remember to use the disabled loos for a while I completely recover!

Three weeks on, I'm feeling better than I have done for months, barring the slow walking etc. My jaundice is greatly improved, Billi Rubin 116 last week,  the lowest since about october/November last year. Currnetly I am a drain bag free zone but am completely paranoid about the drain leaking as it caused soooo many problems whilst in hospital! I've lost about 5 & half stone (77lb) over the last 3 years & now have my hair really short so lots of people don't recognise me - which I find rather funny!

I'm now waiting to have an even larger drain put in, the radman that saw me 2 weeks ago was the one that did the surgical stuff last July - he told me we'd met - I knew I wouldn't have forgotten that face! But of course I was deeply unconcious at the time! No less than a Greek God! He said he'd been working in the States for a few months so if any of you have been fortunate enough to see Surgeon Commander Mac Armstrong (Royal Navy) I hope you enjoyed it as much as me! I believe my surgery last year was only scheduled when my surgeon knew the day he could get Mac to do his bit - Mr Stell was having no-one else do the job, so it seems he has a reputation to match his looks. And manner, extremely good at explaining everything.

So still 'no evidence of recurrence of the tumour', I'm 2 years post op now, which was a huge relief, a lot of the recent weight loss is down to malabsorption caused by the drain bag, it had caused almost total dehydration & caused some serious liver malfunction because of this. Hopefully it will carry on draining internally until the new drain is sorted & thereafter! In the mean time I'm back mostly with the hepatologists, who have a different view of things than the surgeons & at this point I'm not unhappy about that, they had the diagnosis sorted within days.

I guess Betsy & Bob are the only others I know of who have similar long term drainage problems - it seems it's a very rare complication of the surgery. Hopefully time will bring more experience & we can all be sorted out! Bod I truly hope your problems will resolve after your surgery. it is horrible trying to 'live' with all the attendant troubles. 
I'm now anaemic, to add to the fun & games, but not seriously so, more nuisance value.

best wishes to you all, old & new members, I miss Kris & Teddy's repots dreadfully, despite not being on line, some of the bravest, most unselfish folk i have ever to fortunate enough to have contact with.

Val x

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(6 replies, posted in Members' Cafe)

Hi Lainey, I'm so sorry not to have been ontouch since Teddy passed but am very pleased to see that you're giving the hospice 'some wellie' as we Brits might politely put it, or kicking some butt! What a girl you are! I've been suffering with major broadband issues (& continuing drainge problems), mostly the reason for not being on line - tonight it has deigned to work!
I'm really pleased to see your positive attitude appears to be carrying you through, I do hope you had a great time over Passover & Easter, love & hugs, Val xxx

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(10 replies, posted in Members' Cafe)

A Happy Thaksgiving to all friends across the Pond (not forgetting Kris across the North Sea), I hope all cc worries can be put away for a few day to allow fun & feasting with your families,

Enjoy, love Val x

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(10 replies, posted in Members' Cafe)

Hi All, and thanks again - brilliant suggestions!

Kris,  Mac & cheese pie? Scooby style UUUUUHHHH? My overactive imagination immediately thinks Big Mac in a pie with cheese on top - I'm sure that would be a drug fuelled bad dream! Do put me right PLEASE!

Pam & slittle, is sweet tea like iced tea with lots of sugar? I'm liking the sound of the apple juice with mulling spices - yum! 

Turkey & Cranberry rolls are just bread rolls filled with cold turkey & cranberry sauce (which here is more of a relish or pickle consistency). This is the kind of food we eat at Christmas when we can't manage any more roast dinner!

Lainey, thanks for clarification on the fizz!

I find the differences in names for food endlessly fascinating!

Thanks again, Val x

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(18 replies, posted in General Discussion)

Hi Kris, such good news!

That's a fantastic package of care & enjoy your pool visits.

I hope your cats are pleased to see you  -  my big cat used to sit & turn his back on me to show his displeasure that I'd dared to leave him! It didn't last too long though.

I bet Hans is thrilled to have you at home at last - enjoy it all of you!
x

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(10 replies, posted in Members' Cafe)

Thanks Patty & Lainey!
Excellent, I will pass the info on. I had wondered about cranberry juice with somethiing fizzy/carbonated.

One small query, is 'soda' for you what we would call 'lemonade' or the like? Soda here is fizzy water!

Thanks, Val x

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(10 replies, posted in Members' Cafe)

Hi all! A non cc question,

My cousin is organising a Thanksgiving evening at the village Methodist Church, it'll be food on a theme rather than the full meal as not possible to cater a big sit down for 60 os so!

The plan is turkey & cranberry rolls plus pumpkin pie & pecan pie, possibly pumkin muffins, & the like.

However, are there any traditional drinks?
I've had a look on a couple of websites but most are for alcholic cocktails which won't do for the teetotal Methodists!

All suggestions that will go with the above would be gratefully recieved!

Thank you muchly!

Val x

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(10 replies, posted in General Discussion)

Hi Kris,

Red tape is a pain in the butt frankly.

Could you send the troublesome tulip eating boar to the home health care team as a gift? That might liven them up a little!

Good luck with the German expedition in the mean time, here's hoping for a positive response.

Val x

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(23 replies, posted in General Discussion)

Hi Betsy!

Drinking? Alcohol? YAY! You enjoy!

Thanks for the hair info, I'll look up Nioxin & have a read.

My appointment went fine on Friday thanks. I actually saw The Big Man (my surgeon, who is around 6'5'' tall!). that worried me for a moment, as I'm used to seeing the lower ranks, but no, they haven't discovered anything sinister.
He did say that a recurrence as the cause can't be entirely ruled out but it's not looking that likely. PHEW!
I know he didn't find any evidence of tumour recurrence during the July operation so there couldn't have been anything showing on the drain change cholangiogram either. More PHEW!
Because, we all know that thought is always in the back of our minds.....

He was rather concerned that I was jaundiced again, although it's hardly bad in terms of where I've been over the last few months, but obviously can't be allowed to continue long term.
The drain was flushed & poo has returned to a more normal colour already so can but hope it was just gunk in the drain.
I'll be getting an appointment for another drain change in the next few weeks. Oh good, that's something to look forward to!

I asked him about the hair loss - he thought my hair looked fine to him! But he's a man & bald, so it probably would! I'm sure my GP will have a different view, as she's a woman.
Sorry chaps, I know it's no fun for you either when this happens, it's just a little more cosmetically acceptable! To us women anyway. Hope I'm not being sexist there.

As for the wind, I'm not surprised it's been echoing round Pheonix & Cleveland... Things have subsided now, thank goodness, in my case I do get more wind since all the surgery but it gets to this pitch when I'm jaundiced and it's a improper digestion thing. Horrible, but very funny in a six year old child kind of way!

Good luck for your appointment on the 19th & enjooy your wine until then!

Val x

Hi Linda,

Best of luck with your appointment on Tues - lets hope you get a good & helpful doc!

As for the concert, tricky one. I wasn't able to go to any of the concerts I'd booked for in the summer which was a huge disappointment but I knew if I tried I'd have been so ill it would just not have been worth it.

My main sacrifice was Eddie Vedder - such a shame! How about your brother rings Jon Bon Jovi & gets him to come along to the hotel and see you personally?  JBJ would take my mind off ANYTHING for a short while!

On the ibuprofen debate, I think that most of the NSAIDs  (ibuprofen, naproxen, etc) are a potential problem for anyone with problems affecting the GI tract. They can cause gastric bleeding & inflammation so I guess none of us need any help in that direction.

You take care, really hope it all goes well on Tues,

Val x

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(23 replies, posted in General Discussion)

Hi Betsy!

I have my outpatients appointment with the surgeons tomorrow so will see what they have to say.
I'm ok ta, just fed up with still feeling below par all the time, I think my bilirubin may have gone up again, I certainly have appaling wind.... can you hear it in Cleveland?  I may be jet propelled to the hospital tomorrow at this rate!
One thing for general debate, has anyone else suffered from hair loss after jaundice? It happened last time I had it & my hair had just about recovered by the time of this bout but I'm shedding loads - just as well I had plenty to begin with.
I have looked this up on the web& it seems likely it's the after effects of lack of nutrition during the juandice period. I just hope it stops soon!
But enough of the whinging & whining, compared to so many on here I have little to complain about.
How are things with you?
Val x

Hi Lainey, have nothing useful to add on this as no experience in the field. Just want to say that like everyone else, I'm thinking of you often & sending lots of good wishes & hugs for comfort, for you both & always the hope of a good hand. Lots of love Val xxx

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(7 replies, posted in General Discussion)

Oh Lainey, you certainly know how to keep life interesting..... hope you get your hand sorted ok tomorrow!

So pleased you all had a good time on Teddy's birthday - I'm sure he deserves even more communications than the Pope!
Good that the oxygen is helping too, keep on keeping on, lots of love Val xxx

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(23 replies, posted in General Discussion)

Hi Kris, what a pile of pants you are having!
I am so sorry it's all taking such a time to sort out, here's hoping the tube in a tube will get you sorted soon.
You'll be able to regale us with tales of morphine dreams & suppository hell soon, you take good care, I think of you so often & wish there was something more practical I could do to help, I guess positive thoughts & good wishes will have to do for know. love Val xxx

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(13 replies, posted in Members' Cafe)

Happy Birthday Teddy! Hope the little trip out is enjoyable & hope you both have a lovely evening, lots of love, Val xxx

Well done Julia!

Given 'em hell on November 3rd - I'll look forward to seeing you on the news that day!

love Val xxx

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(28 replies, posted in General Discussion)

Hi Dianne,
I think here the gradings go from 0 to 4, 4 being stage IV as often described on here. To the best of my knowledge T2 in my case meant the tumour was still very localised, there was nerve involvement & spread only into the body of the duct but no spread anywhere else, hence the N0 bit.

We all have GP's here who look after you on a day to day basis, do regular blood tests etc & are (usually) kept informed by the hospital docs.

Mutlidisiplinary teams from any related discipline are the thing here, so even if we don't actually see some of the people they're all involved in discussions on a regular basis.
I think this is so there's no overlapping & in theory all the departments you could be involved with are kept up to date.
In my case I know the hepatologists join in even though I don't see them regularly. When I went for the drain change one of them came looking for me to find out how I was doing after seeing my name on the admissions board which I thought was really nice.
I've been told by the nurse specialist that all the radiologists know me intimately - I pointed out it was likely they knew my insides well but not the rest of me! Although who knows who's there when under the influence!
I don't think I'd ever feel 'safe' without some investigations regularly, even if in time that was just bloods. Think I'll be on the CT scan list for a while yet after all the scar tissue biz.
What fun we all have...... Val x

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(16 replies, posted in General Discussion)

So pleased for you Lainey - that's a great result!
I'm so peased Teddy os getting some proper rest as well, that will help both of you.
Thinking of you both constantly, love Val xxx

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(13 replies, posted in General Discussion)

Hi Kris, you are the very brightest star shining in the dark of Julia's strap line, hoping the docs can come up with some radical plan for you, if the power of positive thought & prayer can help then you & your docs should be inundated by the power coming from everyone on here! Thinking of you, x

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(28 replies, posted in General Discussion)

Hi Dianne & welcome to the site from me as well. I thought I'd throw in my twopenneth for what it's worth as we seem to have a similar situation. I'm 50 by the way.

CC was initially suspected with me back in Dec 08 but not finally diagnosed until May 09 after surgery when the blockage in my bile duct turned out to be a stricture but there was a tumour found in the cystic duct.
I had a resection of the bile duct plus a Roux en Y.
The tumour was T2 N0 & I've had no radiotherapy or chemo as this was judged to be unnecessary with the result of the histology.
I've queried this with the surgeons, who I see (unfortunatley I've had problems this year with scar tissue resulting from last year's surgery- no evidence of tumour recurrence to this date) & have 6 monthly CT scans. As I've also now had a PTC plus CT scan plus more surgery I can only think the docs would've found anything nasty lurking.

As I understand things, some folk have chemo & the tumour recurs, some folk don't have chemo & stay clear.
So, it's a bit of a toss up. I think the answer is to get any info you can & then try to reconcile yourself to whatever you (& docs) decide is right for you.
There's no guarantee with anything in this life, we may all get hit by ice falling off an aircraft or some other less freaky accident - we may get a recurrence & have to be treated, we may not.
I was told to just get out there & get on with my life, which I think is pretty good advice. Worrying about it all won't help but I, as with everyone else on these boards will know that is easier said than done.
I've found there are times I cannot bring myself to read some of the posts as I start thinking about what could have/might/could still happen and for me that's not healthy!
Good luck with your investigations, the support you will get form everyone on this site is brilliant, only the best people get affected by this disease!
Best Wishes, Val

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(14 replies, posted in General Discussion)

Hi Harmony!

Great stuff & thanks for the hug, it even reached across the pond to the UK!  Marvellous.

I've been reading your blog - I think I'd like to come and live near you for a short while - your food sounds really good! I'd be a very happy recipient of your 'feed friends' strategy.
I may have questions soon on translations of what certain foods - have you heard the saying that England (& the rest of the UK) & the U.S. are countries separated by a common language? Yes indeed! White beans?

Keep going as you are & watch out for runaway garbage trucks!

Take care, Val x

Hi Linda,
Glad you enjoyed it all. Probably more than I did....... I know sometimes my sense of humour is a little OTT for some!

Moving along, I will ask who came up with the bile drinking idea when I go for my next outpatients appointment - I bet the docs will pretend they have no idea!

I hope to cheer you up some more soon! Val x

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(16 replies, posted in General Discussion)

Hi Lainey, oh dear, this sounds a problem for you & Teddy.

I also got some rather strange effects from morphine - I would think that people were standing around the bed looking at me - they weren't! I would have very odd 'flashes' where I would get a sort of 'close-up' effect of something I was looking at, then it would switch back, also strange sound-effects.
I do hope hospice have got back to you by now & you are able to get Teddy sorted for some restful sleep. And for you also.
love Val x

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(15 replies, posted in General Discussion)

Hi Kris,

So sorry you're having such a nuisance of a time of it - I know how three weeks incarceration in hospital feels - I'll do the screaming for you.

I hope the combined power of all your friends & admirers prayers & good wishes will give the docs a big step up in their endeavors,

You're regularly in m my thoughts,  love & best wishes Val x