Hello and thanks to all who have expressed their sorrow at the passing of my dear Mum,your sentiments are greatly appreciated.
I have gone back and read my posts a couple times now and remember how much it helped me during the hard times of her illness to express my emotions here and "vent" somewhat.It really was a great help.

Also, when I look at the dates involved and how unwell she was in 2010 and again in 2011, I find it almost miraculous that we had so much more time with her than we expected.Also it brings to mind that she had suffered enough and is now in a better place.

We will never know if it was her cancer that finally claimed her or a completely different event, she passed so quickly at the end .

We have all the funeral arrangements in place now for Monday 28th .I hope she is happy with our choice of music and hymns.I shall look for a sign!

To all my supporters here a big thank you----God Bless you all !!!!

ScottsMum.

Hello to all at CC forum,

Having no news from me since September 2011 when my Mum's cancer was deemed in remission; she has spent the last months of her life in a wonderfully homely care home a few miles from our town and sadly passed away on 18th May 2012.She was 83 years old and until her strokes and CC diagnosis had lived a wonderful life.

She appeared to have had an upper GI bleed which may or may not had to do with CC mets.We have decided against a post mortem/autopsy ,her poor body had been through enough trauma.She was very frail but fought with spirit to the end,which when it came was mercifully quick and peaceful after her long journey.

God Speed Mum we love you--Fly little bird!

My best wishes to you all,and thanks for your support in the past.

ScottsMum

Hello again everyone,

In a more earth shattering update we have just received news today of a recent scan that Mum had last Friday.

Her tumour appears to be in REMISSION!!!!

Her metal stent is in position and functioning well and there are no detectable or apparent secondary growths to the liver or the pancreas. The tumour mass shown in place around the bile duct in last year's scan is gone or so small now as to be undetectable on the recent scan .

This at least explains her improvement ,and then some! We are all a bit taken aback ,and I'm very concerned now regarding her long term care as she is completely helpless, really.A battle will now start again with my father who was overwhelmed trying to look after her at home last time.He is 83 years old and not up to the job ,but try telling him that!

However I hope that the news of her tumour receding gives succour to the many others out there going through their own journey at this time.
She had NO treatment or chemo ,and seemed to put it out of her mind completely that she had a cancer.Her own body seems to have done the rest.
I still cannot believe I am writing this.I hope that they have not mixed up the results!

So onward into an unknown future ,still one day at a time.

Blessings to every one of you ,and I wish you all your own miracle.

ScottsMum

Hello everyone.

Haven't been on for a while so here is an update. For another couple of months my Mum has made it through.Her tenacity and fighting spirit has surprised everyone including her doctors and caregivers.She has been taken off the driver meds. and put on morphine patches and the past few days even shown some improvement.They had her up for short periods and dressed ,sitting in a chair ,after six months in bed.She was taken for a bath yesterday and her hair washed which pleased her greatly.

Today she is not so well again and has blown up one of her fevers,so all this apparent recovery is down the pan once more.

It is very much one day at a time with this CC. She does not have too much pain and is able to eat a little every day.She is still communicating well most days,although she does have sleepy periods.

I cannot believe it's nearly a year since their Diamond Wedding party.My folks will have been married 61 years next month.

Stay strong everyone and don't hold back on the love,

ScottsMum

Yet another month gone by and Mum still with us although weak and sleeping a lot.She is talking of "Wanting away" now and who could blame her after nearly five months bedridden and staring at the hospital ceiling when not asleep.She cannot read or watch TV as she lost her sight (with the second stroke)in her left eye and her vision was failing anyway.
She talks of being wonderfully looked after by the nursing staff and doctors at the local infirmary but even they have not been able to keep her pain free despite best efforts.They had to take her off the driver meds about two weeks ago due to running out of sites on her body to install it ,she has been on them so long.The alternative medication is not working as well and she has had some vomiting,and generally not feeling good.
When it looked like she could not become frailer and weaker without actually passing away she has dumbfounded everyone with her tenacity for life.
The great granddaughters are visiting again in two days from Ireland, so God willing she will see them one more time.

My thoughts are with you all who are living through a CC journey.

Scottsmum

Well another month has passed and my Mum did not pass away as we and the nursing staff expected. Weak and thinner every day she continues to hold her own,although she has been unwell twice and we thought not long now.
Both times she has rallied and come back to us.
It has come to be a daily ritual visiting the hospital and my father is there more than the staff,spending all afternoon every day and going back in the evening after his meal.We are so lucky that there is a local infirmary where she is only 5 minutes away or all these visits would not be possible.At the moment she has a side room which gives them good privacy and she can have as many visitors as she likes.
The driver meds. are quite high now ,but of course she has built up a tolerance to them .What would knock us cold is keeping her comfortable and although she does sleep quite a lot she has good periods where she is lucid and can carry on a conversation.
It will be one year on the 13th since she was admitted to Ninewells with painless jaundice.

This is just an update on her journey to any who are following her story.

Scottsmum

I just felt I had to vent a little today what with all the hype about Mother's Day on TV and her own Birthday coming up on the 6th April, I feel it keenly that I have nothing to celebrate this year ,and will have no mother to buy presents and cards for next year.Having had a mum for 60 years (nearly!)that is going to feel very strange to me.

Mum remains in hospital on palliative meds. for six weeks now and she is still among us while others in the neighbouring beds have completed their journeys and passed over.

It is very tiring emotionally on the family,especially my Dad, who is beginning to look strained and depressed.I don't know what to say to him anymore,and we sometimes just sit and watch her sleep.She is so frail and tiny now there is barely a bump in the bedclothes where her legs are,and her features are skeletal,so much so that you can barely recognise her. Surely it cannot be much longer now,but I'd not like her to die on her birthday for some reason.She will be 82 years old,a good age I know, but I just wish she had not had the debility of the strokes and CC to contend with this past year and passed with something quicker and therefore kinder.This you would wish for a mother and a friend ,which she is to me.

So sad yet tears won't come.

ScottsMum.

Dear Rae,

Sorry to hear that your mother has passed , but be assured that she is not gone . As close as you were with her she will still figure in your life a great deal as the love never dies,it is carried with you for the rest of your days.

Please try to rest some and eat something nourishing for your own body's sake.Once the funeral is past is probably when it will hit you the most-we lost my husband's sister last summer and we know.

Facing it all again with my mother soon .The circle of life goes on, look to the beauty of the sky and the soft wind in your face . Your mother will be there.

ScottsMum.

Thanks to all who answered , I will take your advice.

To Lainy if you read this -I can put a face to your name- as I watched your video regarding the shameful report of the Hospice where Teddy passed.I was heartbroken to hear of this as these places are supposed to be a haven for people approaching the end of life,not some sort of dying conveyor belt where no one could care less.He deserved so much better as does anyone who may cross their doorway.Now you have to cope with anger and regret along with your grief .

I know they are giving Mum more than she likely needs in the Morphine department and that may lead to things that may shorten life,but at this stage I find that immaterial.She is settled and pain free.

May God take her when he wills ,her body is spent.

ScottsMum.

The latest is that the doctor has upped Mum's medication and she is sleeping mostly,and seems free of pain and peaceful. I don't feel that this much morphine is really necessary yet as it is suppressing her respiration,and as a former nurse know what the outcome of that  will likely be.

However my Dad is hoping now that she will peacefully go sooner than later,so I will go along with the doctor and his decision without comment.

I just feel that there was still so much I would have liked to say to her before she went.
My parents didn't talk about the cancer and that she was actually dying from CC,they preferred to pretend it wasn't going to happen.It didn't give me much chance to tell her how much I'll miss her .We just seemed to drivel on about mundane things on our visits ,although I realise that talking about dying wasn't a cheery subject I would have liked to reassure her more .Also that we will take good care of Dad ,who after the death of Walter ,her brother ,some years ago will be the LAST Musketeer.The three of them were always together.

I am sure that Walter will come take her soon to a better place.

ScottsMum.

11

(14 replies, posted in Introductions!)

Hello Rae,

I would just like to let you know that we are going through the self same thing with my Mum who was diagnosed ten months ago.
She is bed-bound on a lot of morphine now and we are just waiting for the inevitable.

How wonderful that the doctors were able to give your  mother 11 years with you after diagnosis and resection!This will make very hopeful reading for those about to go through with this challenging surgery,and bring them bucketfuls of hope.

Unfortunately they could not offer my Mum any treatment due to age and frailty,and she was also disabled from strokes,one which she suffered after diagnosis and left her pretty immobile.You can read our journey so far under "Mum just diagnosed Ninewells" if you are interested.

This is a very informative site.I haven't answered a lot of posts due to the fact that Mum was having no treatment,but found it reassuring that we are not alone in our everyday battle with CC,and gleaned a lot of information on what to expect along the way.

Many come back( after their loved one passes) to the site to share their grief and experience of bereavement.Just typing out the words can help to settle the mind and calm the spirit.

From our family to yours I wish your loved one a peaceful passing and keep safe all the wonderful memories of years gone by in your heart.

Mum was delighted to see her little Emma and she is certainly a beautiful happy baby and very well behaved too.Also she was amazed at how long the three year old's hair is now.I think that she is a little depressed tonight as they have all returned to Ireland today,She is probably aware she may not see them again.

Sad yet happy times.My Dad doesn't know where he is emotionally at this moment.He was all steeled up for the worst when she was taken away in the ambulance,but she seems to have rallied a bit on the driver meds now,and he doesn't know what to think.

This CC is a tricky beggar.They may even send her home again,we don't know.I don't think it's easy to be on driver meds at home .Gavin you would know.

ScottsMum

Hi to all especially Gavin and Lainy who took the time to answer,Thanks.

Can I just say firstly that I am actually( Scott's mum ie ) female to clear up any ambiguity,and the lady with CC is my mother & Scott's gran.

Yes Gavin,they have her on the syringe driver and she is now actually eating a little for the first time in TWO WEEKS and no apparent nausea.She is also chatting away and so animated as of yesterday.We just wonder if it can last at all or is just the eye of the storm.She was taking a lot of meds by oral route and I don't think this was helping her cause one bit.

She has had a peaceful night by all accounts but the ward is very busy.The hospice side is run alongside general CO Elderly in Brechin,but that did not stop her from requesting a private room !Bless her!Some hope!

The whole family is to visit today, including the Irish contingent including the new baby,her second great grand daughter, whom she has not yet seen in the flesh,so it is a day to remember.

She has been so much recovered since the driver was attached, we didn't know if she would get through the night on Thursday,she seemed so gravely ill at home.

She has been having huge spikes of temperature ,but forging through all the info I can glean from this site I read that others have experienced this and it does not necessarily mean infection.Every time it happens they have classed it as UTI due to her catheter and prescribed antibiotics.This time we and the admitting GP said enough ,lets treat palliatively and see what happens ,she is so frail,it may be time to let go.The fever disappeared overnight on its own,and on the driver she is chatting away as if she has just returned from the Pub on a Saturday night!

She is so tiny and endearing and funny it just breaks your heart ,but we laugh along with her and treasure the moments.

Keep you posted.What happens next?

ScottsMum

I am sad to report that my Mum has left this morning to go into hospice care. She spiked a high fever with vomiting last evening suddenly. Although she has been refusing most food and reluctantly drinking for about two weeks,it still has kind of taken us by surprise.
A doctor came in the small hours and the district nurses who put her on a syringe driver to make her comfortable and control the nausea.We have declined any aggressive treatment for what seems to be an infection.It seems to be unfair to prolong her life which is of such poor quality now.The doctor completely agreed with the decision.

Now we wait,and hope that she is comfortable till nature takes it course.
She has had a long and happy life, it is just so sad that it had to end with this damned CC.

I know we all have to pass with something but she has had a lot to bear with the strokes as well.So much burden for such small shoulders,

I love you Mum.

ScottsMum.

15

(7 replies, posted in Introductions!)

HI Alison,

Sorry to hear your dad is going through such a bad spell .We experienced the same last summer with my mum.She had a metal stent finally inserted and nine months on she is still here with us ,though sadly losing a lot of body weight now due to the lack of appetite which affects her exactly the same as your dad.So take heart, there may be time left yet .

She has an infection as of yesterday,although they are blaming her indwelling catheter (urinary).She is also a stroke victim .My dad still looks after her at home with our help and four daily visits from social care ladies.We are lucky to have this service free in Scotland,or she would have had to have been in a care home.So more antibiotics and waiting to see.

Not many people here have had no treatment other than stent fitted as most seem to be taking the chemo or other treatments,but depending on your dad's staging of disease and his age it may take a gentler pace than you expected. Make the most of the good days to spend happy times with him when you can.

Best wishes
ScottsMum

I have not posted on my Mum's journey for some time as she has been at home under care of my Dad with a lot of help from ourselves and SCO's (social care officers ) coming in four times a day to help .She can not stand without a hoist and her left arm has not regained function after her second stroke.She is mentally aware.

She has lived longer than we expected (at diagnosis )already,how the weeks and months fly by.She is constantly getting urine infections from an indwelling catheter , but always seems to spring back.

However ,she is looking very gaunt now and is refusing to eat any substantial food most days,so I am not hopeful there is much more time left for her .However ,she is not retaining water in her abdomen ,has no jaundice, the stent still appears to be working, so who knows, maybe she will surprise us all again.

I love her dearly and do not want her to suffer,so I hope there is not going  to be a  lot of pain after all the trauma of her strokes and lengthy hospital stays.She has borne so much to this point already.Other than the stent they have offered no treatment because of her age and frailty.Perhaps the cancer is growing slower because of her age.

She has lived to celebrate her Diamond wedding anniversary ,birth of a second great -granddaughter, Christmas and New Years since she was diagnosed last  May 13th .We continue to hold our breath and take each day as it comes.

17

(19 replies, posted in Introductions!)

Tina ,
My sympathies for the recent loss of your dear mum,I am sure that she was a wonderful person and you will miss her terribly.
We recently lost my sister in law suddenly due to respiratory failure at the age of 58 years,and I am currently supporting my father to look after my 81 yrs old mother who was diagnosed in June with cholangio.
Our situation is much complicated by the fact she has also had two serious strokes.Our story is there to read under" Mum just diagnosed Ninewells".

My own mother's cancer was not that advanced in June but her age and frailty meant that the doctors have given her no treatment other than fitting a metal stent to relieve her jaundice.I have mixed feelings about this ,but am glad she did not have to suffer the ill effects of Chemo or radiation as I understand that in many instances it has little effect on cholangio.

I think that at her age they are just going to let nature take its course,and keep her as comfortable as possible.The only thing that bothers me somewhat is not knowing how things are progressing inside her poor body, but with the disability and dependency of her condition,I think that she will be ready to go when it is time.I know that I would in her position,as her quality of life is now gone.

I hope that you will soon be in the place where your grief turns into quiet joy recalling all the happy and even funny and endearing little things that made your mother so special to you.At that point you will see and hear and even smell things that will remind you of her and be assured that she is still close by,keeping an eye on her family,but in a place where illness of the body can no longer affect her.

Sadly I fear that I will be in your position fairly soon,missing my own mum,but you just never know with this unpredictable cancer ,maybe she will surprise us all.
We just get on with the practicalities of every day and do not dwell on it ,as every day is a gift.

ScottsMum.

Hello all,
Not posted for a while ,my Mum has been in hospital for some months now after her stroke and was discharged last Wednesday into "care in the community".We have been away on a  holiday which was already booked and paid for ,as her health seemed stable and that proved to be the case with no nasty surprises whilst we were away.
Coming back we were thrown into getting a wheelchair friendly flat ready for Mum and Dad,and also the preparations for their already booked Diamond Wedding party,which they quite bravely wanted to go ahead with.

That took place on the 15th October and all family and friends seemed to have a good time despite the obvious sad disability of Mum who had to attend in her wheelchair,instead of their intended dancing round the hall.

Whilst "Congratulations" was playing to start the dancing I took my Grand daughter and whirled her around as representing the future of the family so to speak.Then everyone just joined in and a good time was had by all.
Another great grandchild is expected next week for my parents,and at least she is going to see that one as well.So happy yet sad times.

Mum's weight seems to be holding up and no sign that her cholangio is advancing appreciably,so maybe it is only growing slowly.Her metal stent seems to be working fine at the moment,and she eats a little and no vomiting.She is very disabled now and in some pain from stiffness with her immobility and also blood clots in her groin give her a lot of trouble and a very swollen leg.She is also nearly blind from the stroke.All this and her mind is still quite acute ,so she is aware that she is in a very poor state and dependent.

I don't think with all the help in the world that my Dad will manage to cope very long with her at home,but he will have to experience and find that out for himself,as he is the most stubborn old man, but  sadly not as capable as he imagines himself to be. The upheaval of her discharge, the move and the party in the one week has been a lot to take in and has left him all at sea.But at least they have the Royal Message on the sideboard.

I am so happy that she has made it through to their special day,and each one now will be a bonus,although very hard too.I expect she will have to go into care as she deteriorates,possibly very soon,but they are together again for now.

Hoping all of you experiencing life with Cholangio are finding some small thing to treasure each day,

From a very tired and weary,

ScottsMum.

19

(1 replies, posted in Members' Cafe)

Hi Everyone ,

Just found out that Jim Cronin founder of Monkey World in the UK died in 2007 of cholangio at age 55, back in 2007.I knew he had liver cancer, but at that time had never heard of CC, till Mum was diagnosed this year.As primary liver cancer rarely occurs,I kind of put two and two together and found out that it was in fact CC which he suffered from.

As a regular viewer of the program I feel so sad seeing the re-runs,he did not even look ill,but it took him so swiftly after diagnosis.

His wife Alison has bravely soldiered on in his memory ,dedicating her life to the orphaned and often abused rescued primates.

The best people seem to get this cursed disease.

Scottsmum.

Hello all,
Just to report that Mum is a good bit better and feeling well enough to complain about the food/nurses etc. More like herself!

She is not making great headway with the stroke recovery ,but it seems she is over the hump with her other health problems for the time being and the stent is working well.

Her appetite has returned somewhat and she is enjoying small seasonal treats of fruit we are taking in.

So quiet times and we are thankful.

Scott'sMum

Hi again and thanks to all who posted.

Mum has been receiving IV anti-biotic since yesterday and her temp. has thankfully dropped to just about normal today,and she had a better night last night,sleeping well.Urine and bloods have been sent away,so hopefully they will not find it is the stent.The ESBL is probably the cause.Superbugs!!

She is more comfortable today,but having some pain from the blood clots in her groin,which are being slow to resolve.

Such a frail old lady now ,my Dad looks like he could be her son,she is aging so rapidly before our eyes.Starting to look like a baby bird.

ScottsMum

Went this evening to the hospital to see my Mum and she has been running a bit of a a temperature for a couple days ,but last night and today it is officially a fever.Over 39 degrees .She is flushed and looks poorly.

They are blaming the super-bug in her urine ,but there are no indications of discomfort.She had an X-Ray today to rule out a chest infection,and that came back clear.

I hope her stent is not infected. I know this can happen sometimes to people ,but she was fitted with a metal one which is supposed to be the more permanent option?

Anyone have experience of fever and stent blockage/infection themselves?

She just seems to have one setback after another.Discouraging for her and us as well.

23

(11 replies, posted in General Discussion)

Just wanted to Update on the link sent some time ago by Marion. RE- Hyper coagulation of the blood

Mum has now a large blood clot formed in her groin caused they say by the immobility after the stroke + tendency of the blood to clot easily probably due to the cancer.

How much more for her to tolerate ?

ScottsMum.

Hi Gavin,

We had a good meeting with the doctor on Wed. and it seems that her bloods have come back A OK and they are blaming the antibiotics they administered for her super -bug  urine infection  for her vomiting.

They have given her some IV fluids and stronger anti-nausea drugs and she has perked up a good bit.The vomiting has moderated to a bit of reflux today and she is smiling again to see us all.

Her prognosis is for months rather than just weeks ,so we were very alarmed at the vomiting .It was quite intense and I would hope that if it returns during the course of her illness ,that they can do something to control it.

She has been having Heparin injections for her clots, so the warfarin will not be started till she is over the sickness a day or two,in case they unsettle her again.

Typical case of the cure being worse than the illness.She was being big time sick (as if she was on chemo.)Very distressing to see.

Dad has had a first visit from the Macmillan nurse and she is popping in to see Mum tomorrow, I believe.So this is all very positive and I am relieved the latest crisis seems past for the time being.

The doctors at the stroke unit have been swotting up about CC and are in contact with the GI consultants at Ninewells.We are very happy to leave her at Stracathro  as the unit has a ratio of four staff to seven patients at the moment.Where else would you get that kind of attention,certainly not at Ninewells !They are starting her physio again too as this is all in situ on the unit. It really is 5*,we will have to have a collection for the unit sometime in the future ,for all their good work.

Thanks for your ongoing concern,

Scottsmum.

Thanks Gavin for your post,

The past couple days have been pretty horrible for my Mum,the nausea has worsened despite injections of anti-nausea meds.and nothing has been staying down,not even sips of water.

Dad and I are meeting with one of her doctors tomorrow afternoon,but I think things are getting quite serious now myself, I'm wondering what more can come.

If they can't control the vomiting and it doesn't abate she is going to go through hell as she is spitting up every few minutes when awake.She goes off to sleep for a little while and seems comfortable ,but the minute she wakes up she vomits again.

So despondent seeing her struggle with this.Can the CC be taking over already,they gave her up to a year from her scan results.Maybe the blood tests will give us a clearer picture of what is happening.

Warfarin treatment could not be initiated due to vomiting up the tablets.The clots will still be a potential problem .

Feeling tearful tonight.

ScottsMum