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


(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!


(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


(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


(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


(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


(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


(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


(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


(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


(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


(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


(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


(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

Hi Betsy,
I've been catching up with your posts as well - I thought I had problems? Oh dear, mine are as but a blip in comparison! I've felt ill enough over just 10 weeks with the external drain, let alone 10 months - I think you're the hero! Think it's fair to say I've been pretty bad tempered!

A three hour MRI sounds ghastly - the level of noise gives you a headache after 40 minutes - that'll have been some headache. I seem to recall the liver MRI requiring a lot of breath holding - that won't have helped any.
I hope you're feeling a little better now. It is all very tiring.
Today I had my extra special scrub & hair wash in the shower plus change the dressings over the drain, then had to take my Mum to the doctor's surgery, I waited there about an hour (sitting in the car), we got home, I got a quick lunch & that was pretty much it, there was no energy left to do the other things I was planning on. And I am GOOD in comparison to even three weeks ago. I sympathise!

Eddie Izzard is very funny indeed & a very interesting man. Last year (I think!) he ran 43 marathons in 51 days! I believe he's done quite a lot of 'serious' acting as well as being a stand-up comedian. 

Best wishes, Val


(10 replies, posted in General Discussion)

Hi Lainey,

I trust that nature will continue to grant both you & Teddy peace. I hope that you will gain strength from all of those thinking of you & sending good wishes. Minute by minute, day by day.

We'll await news on 'the juicy bits', love & hugs Val x

Hi Julia
Having been able to study the contents of the dreaded bag for weeks I developed a horrified fascination for the gunk & 'fur' that seemed to build up in the inlet area - I would be quite convinced it would block & then it would clear again a few hours later. this must be what happens insode the stents.
Hope Sue gets some joy from her appointment on Monday - I'll keep everthing crossed for then.
Love to you all xxx

Hi Marion, 
Monty Python is exactly my sort of humour - I'm flattered if my rendition even makes you think of those sketches! Fortunately we have quite a lot of lawned area!

Hi Lainey, thank you!
It's only my attitude keeps me going at times I think. As an aside to that, in March I started a course of meditation classes as the stress was obviously not going to stop I had to find another way of getting through it all, I found this incredibly helpful & although I haven't done much recently as I haven't been able to sit properly my blood pressure is still significantly lower than previously.

Hi Bob, yes I believe the stent is draining internally, I certainly don't look as yellow or 'glowy' as last week, will have to see what the LFT's say on Friday.
Yes, I think the idea is to stretch out the blockage by dilation, although having read some of the entries from Betsy & others I'm now a little concerned knowing that this can tear the bile duct. I guess scar tissue is often more stiff than normal tissue on the outside, I suppose this is the case inside as well.

Thanks Julia! I love your new 'strap line'!

Hi All!
Maybe the Coke/bile cocktail is a peculiarly British invention! We have a national reputation for stoicism!

I was threatened with this back in the very early days of the illness after the very first drain. The hepatologists seem very keen on this option!

The logic as I understand it is that we need bile to aid the digestion of food, mainly to 'process' the fat soluble vitamins & minerals.
Apparently we produce around one to one and a half litres of bile a day. If the bile duct is blocked & a drain is inserted the bile will take the easiest route, which is usually via the drain & outwards into a bag. If the output is all or mostly into the drain bag then you will quickly begin to become deficent in said vitamins etc. so the body needs supplementation in order to minimise this.
If the loss into the bag is less than the total bile production & the jaundice symptoms are improving then the system is absorbing a percentage of the bile.
When the drain is  subsequently 'internalised' the bile is all taken back into the system so no need for supplementation! 
Here, the bag is removed from the drain tubing & the tube is 'capped' so the blockage in the duct is bypassed with the internal part of the drain acting as a stent but external access to the bile ducts is maintained for cholangiograms etc.
Hence, the drain is working internally but still has external access by way of about 4inches of tube with a cap.

That's how it's all been explained to me so I hope that helps!

Lainey, so good to hear from you!

I don't think Coca-Cola will be taking up this flavour any time soon! Lets say it's best described as 'interesting'.
The bile has a strong 'musty' flavour & coke seems to be the only thing that will disguise it sufficiently! I tried several other things (not being a fan of Coke, or fizzy drinks in general), blackcurrant Vimto, dandelion & burdock etc etc but it was frankly much worse!

I was told to take 100ml bile to 200ml Coke three times a day, but this dilution is not really enough! I'm afraid I was only compliant twice a day! I just couldn't bear to do it more than that!
It's best (for future reference!) to measure out the Coke, let it go flat, then add the bile. If you add the coke to the bile the result is inches of fluorescent yellow foam which does not settle & you have to remove the foam with a spoon......   rather offputting!
My strategy was to do the mix, stand in the garden, in the breeze, gaze at the distant hills & down it as quickly as possible!

Much as I hate to admit the docs seem to be right on this, I did feel much worse & my digestion was significantly worse if I didn't comply! And it makes poo brown again!

It's also very interesting (I don't get out much) how much the consistency of the bile changes day to day & even hour to hour. There are 'bits', greasy blobs, I even had some tiny stones come through the drain, I believe the Rad man told me this was normal, but as I was under the influence of Midazolam I can't be sure if this conversation did take place or I dreamt it!

However, it does mean that there are times when the bile is just not drinkable.
The 'greenish' days were the worst.
Another good reason to take the cocktail when in the garden - it really doesn't do to spit a large mouthful across the kitchen or living room! Quite acceptable on the lawn!

Hi Andrea, I'm being treated at Derriford Hospital in Plymouth. There is a team of Hepato-biliary-pancreatic surgeons & an excellent hepatology department. One of the Hepatologists (it may be both -I only know the history of one) trained at Kings in London & was sent to the Devon outpost so that there was a good department available for the south-west of England.
It seems likely (in the absence of any evidence of recurrence of a tumour) that my current  problems are caused by scar tissue blocking the bile duct & hence the liver, resulting from the previous resection.
The rad man has told me I'm not suitable for a metal stent as they do block over time & the plastic tubes (such as I currently have) can be accessed & changed under sedation, usually without further surgical intervention.

I'm sorry to hear that your Dad's stent is a problem. I do hope he continues to do well, even with the high bilirubin & the drain. It seems to me that we are often able to continue functioning quite well despite high bilirubin levels.

I wonder if your friend's dad was having the bile via iv as a more palatable alternative to the oral dose? I can only imagine that the docs see the oral route as needing less medical intervention for those of us stoic / daft enough to comply!

Marion, I hope all this info helps! I'm more than sure you know virtually all of it so please excuse my 'teaching granny to suck eggs' explanation! Thank you for your other advice. I will endeavor to check in on here a little more often!

Very best wishes, Val

Hi All!

I've not been on the site for some time, but felt it time for a visit to share the ongoing problems from cc, the gift that just carries on giving!

I was really getting on quite well, had started looking for suitable employment etc etc, unfortunately my Dad was in hospital from the beginning of March after we'd all been pole-axed by the norovirus stomach bug - his dementia made all infections far far more serious.
After several bouts of pneumonia he finally passed away at the beginning of June. I started feeling really quite unwell the following week & put it down to the stress & strain, until I started to turn a pale shade of yellow again. Oh dear.
Blood tests, blah, was admitted to hospital, where the jaundice progressed 'nicely', numerous scans, ultrasounds etc later, the docs concluded that my bile ducts were not dilating despite my bilirubin levels being in excess of 800 (in the UK we measure in double digits so normal is 20-ish) - why was I seemingly quite well? Wasn't that the $64,000 question?

Next stage was a liver biopsy, which thankfullly was normal! Also, no evidence of a return of the tumour, so what to do? The dreaded drain couldn't be inserted under sedation as the ducts were not dilated, so more surgery. Thankfully, again, no evidence of any tumour in the affected area so it appears to be scar tissue from last years resection blocking the liver & causing the problem.
After a four hour op the docs had got the drain in surgically & had opened up three quarters of last years scar which had taken soooo long to heal. Can you hear the sighing?

Fortunately, no wound infection this time & as I recovered 'well' I was allowed home after 6 days, however, having an external drain with the bag was no joke. I know you can get used to anything eventually but this has been hard. Even with the drains previously they were always internalised which although a pain, was manageable after the body adjusts.

I also (this was the real fun bit) had to 'recycle' some of the bile from the drain, i.e. drink it. The only thing that disguises the taste is coca-cola, which I don't particularly like, so starting each day with a coke & bile cocktail really tested my fortitude!

I had problems with the drain 'blocking', which, when I got fed up with visiting the hospital every few days I worked out was an air-lock problem, so learnt how to get that going again.

Last week I had the drain replaced & it's now been 'internalised', a great improvement! The rad man has attempted to dilate the blockage with a balloon so we are now in waiting to see what happens. Yesterday my bilirubin was back up to 88, so more bloods next week. As there always seems to be a 'blip' in bilirubin levels after this procedure it's a wait & see situation.

I'm hoping that I might just start to feel a little better now, or at least have enough energy to do stuff. Any stuff!
The level of fatigue is appalling, although on the bright side I have lost weight! Unfortunatley my stomach doesn't seem to know that it's also allowed to loose weight........

Who knows what will happen longer term - my surgeon is considering a liver resection - the only way to free up enough extra bile duct to do another resection to get rid of the scar tissue, but i guess the same thing could happen again -and what to do then?

The Rad man currently favours a semi-permanent internal/external drain - says this is often done in Canada - is he correct?
But as I was under the influence of Midazolam at the time I can't be quite sure what he said! What a drug!

I know I was incredibly lucky that my tumour was found at such an early stage, so was operable, I haven't had to suffer the rigors of chemo so on that side I have got away with it quite lightly, but the wound infection, along with allergic reactions to virtually all dressings & now this problem, more dressings - I wil be seeing a dermatologist for patch testing next month, it all feels like an uphill battle at times.

I know how some of you are doing from Facebook, a big hello to all of you not in touch on there - one thing I have noted from infrequent visits to this site this year is the astounding number of new members - for a rare cancer there's a heck of a lot! I hope this is mainly due to better info & the site being so so good rather than an increase in cases.

Hello to you all, 'old' or new members & good wishes from the UK!

Best Wishes, Val


(18 replies, posted in General Discussion)

Hi Lainey,

Have logged in tonight after a long time & how sorry I am to see your news of Teddy.

I wish there was something useful or profound that I could say, or even think of to say, but no. I know how this period is, no longer if, but when.  One day at a time is the only way, I'll be thinking of you much & sending positive thoughts & strength, take care, love Val x