1

(4 replies, posted in General Discussion)

Hi there all.  I just want to pop in to say hullo.  It's been a year since my late husband began to feel uncomfortable.  After months of speculation and tests, he was diagnosed with ICC on 21 December 2014.  He died exactly 3 months later.
Those 3 months were a whirlwind, or should I say a hurricane, of activity.
I nursed him 24/7, ran his business and managed 12 staff members from our dining room table.  I never knew I had the strength and looking back, I do not know how I coped.  After he died, things did not get better for me.  We thought we had put all the legalities in place, but little did I know how much paperwork is involved when the owner of a business dies!  I do not believe that I have begun to mourn yet, in the full sense of the word.  The tears I cry are as a result of frustration. 

There are many lessons I learnt which I hope will help some of you, in your day-to-day battle with this cancer.

* No question is "stupid" - ask the oncologist everything you need to know.  And if you do not understand what he/she is saying. Ask them to speak normal English!

*The oncologists do not want to give a prognosis for this cancer.  This discussion group was a source of much information and what I read here, helped me to realize that he would not have very long and to get things in order.

* Get the patient onto a liquid meal replacement immediately.  Even if he/she is eating solid food, the body does not have the same ability to digest everything.  Meal replacements are easily absorbed into the system.  My husband made use of LifeGain, Forti-Sip and Nestles' Resource.

*Set up a timetable for medication.  Have the times for each medication in columns and tick off when the medication is given to the patient.  This helped us enormously as he had extreme pain and often asked for pain medication.  The time table helped us to establish if any tablet was due or if it was too soon.  IT also helped him to use his mind over the pain when he knew he could not have a tablet for another hour or what.

* Get as much sleep as possible.  When the patient sleeps during the day, do the same.  The house work and laundry can wait. 

* If anyone asks if they can help in anyway, give them a bag of laundry to do for you!!!  On the days when there is a doctor/oncologist appointment or the patient is in hospital, ask a friend or family member to vacuum your house and do other "noisy" tasks around the house.

*One needs to be sensitive about photographs.  But if the patient is willing, get as many as possible in the early stages.  Towards the end, my husband did not want the camera near him!

*Visitors can be a problem.  Visitors were always welcome but I took control of the situation.  IF someone indicated that they wanted to visit, I decided if they could, based on a few criteria.  If they had had no contact with him for a long time, I seldom let these people visit.  But I did if he asked for someone he had not seen for a long time.  I based all visits on his state of mind and condition of his illness on that day.  5 – 10 minutes became a norm.   Towards the end, he began forgetting people.  A friend visited on a weekend, and returned the following Tuesday.  By the 2nd visit, my husband did not know who he was.

*My husband felt that he was “labelled”.  As this cancer is not common in our country, many oncologists came to examine him during his hospital visits.  If possible, request that a certain few practitioners deal with the patient.

*Nursing staff are amazing people.  Allow them to do their work with as little interference as possible. As loved ones, we tend to want to do everything for the patient, and often the nurses may do things a little differently to what we would. But remember that they are trained and paid to do what they do and they have the best interests of the patient at heart.

I would like to say to all, my thoughts are with you.  Don’t give up, the treatments work differently for each one.  Laugh often.  All the best.
Stella!

2

(4 replies, posted in General Discussion)

Hi All
It's been 2 weeks since my belovéd Peter was taken by this terrible disease. Today I am hurting deeply.  Up to now there has been so much going on - 4 months of the terrible illness with the last 2 days been worse that standing at his grave, house full of people, visitors, keeping his business on-going, answering emails and then the decision to clean out his clothing so that someone else can make use of it.  And now today..... I have mixed emotions of anger at the disease, at the medical world who dont seem very interested in this cancer, at myself for not been able to do more to help him in his suffering, and just generally that this happened so quickly and we had so little time to comprehend what was happening and no time to do anything more together before the cancer took control.
Thank you to all of you who offer advice, made suggestions and generally gave words of encourgaement.  This was much appreciated.
I have tried to read some posts on the discussion board, over the past 2 weeks.  But it hurts to read all the symptoms and suffering others are going through, which are so familiar and still raw in my memory.  And therefore I have decided to leave this group.  Should I feel stronger later, I will probably return and try to be an encouragement to others.  But for now, please forgive me... I do not want to have anything more to do with CC.

3

(17 replies, posted in General Discussion)

My beloved Peter passed away 2 days after your husband, on 21 March 2014.  May I say that I know exactly how you are feeling, the yo-yo of emotions, the business of getting everything ready for a funeral and even the choas you are experiencing in your life.  I would like to hold your hand and walk this path with you. You are welcome to email me privately.  XXX

4

(9 replies, posted in General Discussion)

Hi Everyone
After 2 very difficult weeks and 2 very distressing days, my husband passed away at 5.20am yesterday 21 March 2014.
CC is a horrible, dusgustingly cruel cancer that has no mercy on it's victims.
My heart is breaking.  This has happened so quickly.  He was diagnosed 3 months ago.
We had plans to go into semi-retirment at the end of this year. Then we were going to travel around our beautiful country.  A couple of trips abroad where also in the plans.  So many things to do, places to see... and now, what do I do with my life now?  Half of me is gone. I have no plans, no ideas, no purpose.

5

(14 replies, posted in General Discussion)

Hi there
Things are not looking too good for my man.  One specialist has suggested he may have as little as 2 weeks to live.  It is a shock to see him disintigrate under the power of this cancer.  This afternoon he become very ill with loud groaning as he threw up.  He asked me to phone for an abulance as he is dying.... he is in hospital and could not understand why the ambulance was not coming.  I sense that some nurses are loosing interest in him or it just may be my sensitivity.  The care-givers in the ward are amazing people.  I dont know where to from here....

6

(14 replies, posted in General Discussion)

Hi All
Thanks for all the information and encouragement.  My husband is still in hospital and very week.  They have a progrma of when they tap off the fluid. This morning I went to help him with his breakfast and to take his tablets.  He threw up about 2 cups of fluid and porridge.  Although he has often been nauseous, this is the first time he has thrown up so much content.  He has been in hospital for 2 weeks, beside 2 nights he was at home.  This morning he was unable to stand up from the armchair and it took two of us to get him onto his feet and into bed.  He has become very quiet and seldom speaks.  It is so sad to see a determined man with a dominant character reduced to this.

7

(14 replies, posted in General Discussion)

Last night, a "permanent" drain was inserted into my husband's abdomen.  Over 24 hours, 10 litres of fluid have been tapped off.  His ankles are alot less swollen and his abdomen is looking better but still somewhat out of shape.  He is still unwell.  I dont know how I am going to cope with the drain but I do wish I could bring him home now as I want him with me.

Adam. are you still with us on this discussion board?  Just been reading the posts and wondering how you are?

Hi All.  My husband was admitted to hospital in severe pain, this week.  4kgs of fluid was drained from his abdomen.  This relieved the pain considerably.  His ankles are very swollen and he is very unwell but is home again.  Is there anything I can do to assist him - maybe through his diet etc, to slow down future fluid build up.  Also, previously he was very constipated. Since the procedure, his tummy is going, often without him having control.  Can this be expected or is there possibly something else wrong?  All advice most welcome.  Thank you

10

(21 replies, posted in General Discussion)

Yes Lainy, please email the article to me.  I feel knowledge gives my more control as if I know what to expect, I know how to react. Thanks so much.

Thanks to all for your words of encouragement and understanding.  Often we care-givers feel so alone.

This evening, we decided to sell my Isuzu twin-cab.  I have had it for 14 years and it has taken us many outback places.  But we need to sell it and my daughter's old car to purchase a reliable car for her.  I will have my husband's fairly new car.  It is really tough to make these decisions but I am fortunate to have him clear minded and able to advise me.

11

(21 replies, posted in General Discussion)

It's been a tough day today.  Trying to get all the paperwork sorted, documents signed, house onto my name.  Hoping there will be enough time for him to assist me with his wisdom.
He has much backache which is probably from the cancer in his lymph etc.
The oncologist has not mentioned a plan of action regarding the fluis in lung linig or abdomen.  However, our doctor mentioned to my daughter, that they could look at draining it.  Will it help or cause more damage?  His abdomen is very swollen and often seems to spread out in different directions.  He has lost 10kgs but that is all in his shoulders, arms and legs.  Abdomen seems much bigger than before.
The Oncologist has suggested trying chemo to assist with the discomfort.  We are waiting to see if the medical aid will approve it.
How long can this go on?!

12

(16 replies, posted in Introductions!)

Hi there.  Your story sounds so much like mine with my husband.  I can hear the emotion as I read your post becuase it is how I am feeling.
All the best with the treatment and I hope to here that it all turns to the good again soon.
Also a firm believer in God and hoping for miracles.
Take care

13

(21 replies, posted in General Discussion)

Thanks all.  I have been Googling the info on the scan report.  The cancer has spread even further than what the Oncologist in his wisdom, told my hubby.  There are just some things not worth telling him.  He sleeps most of the day.  We are considering chemo to help releive the discomfort and hoepfully give him some stronger days.  Not sure what to expect or how long this will carry on.

14

(21 replies, posted in General Discussion)

Well, it's the worst news we could have wished for.  The cancer has spread extensively.  The radiation did nothing to curb the growth of the original cholangiocarcinoma which has actually grown!  We have a 2 page (A4) report of where all the cancer has gone - and this in 4 months.  Also there is fluid in the lining of his lungs and in his abdominal area.  Not good news at all.  I dont know what else to say...

15

(21 replies, posted in General Discussion)

My husband had another CT scan today, to see what the radiation has done to the ICC and to check his lungs and abdomen.....now the "long" wait to see the Oncologist for the results this afternoon.  I have butterflies in my stomach!

Our 13 year old Jack Russell terrier is behaving very differently to normal.  She was always an outside dog and never slept in the house.  Even after our other dog passed last March, she continued to live outside.  However, since my husband was diagnosed at the end of December 2013, she refuses to be outside.  She whines and barks at the door until we let her in.  She follows me everywhere and sleeps at my feet, wherever I am, during the day and at our bedroom door at night. It is as if she senses I need her company.  She is very deaf and has cateracts.  She is also full of lumps which dont seem to worry her.  The Vet says to leave her be as she eats well and does not appear to be in pain.  It will be a sad day when she has to leave for doggy heaven.  So yes, I think our pets are very aware of what is going on.

17

(4 replies, posted in General Discussion)

Since my husband was diagnosed with ICC in December 2013, I have been doing alot of research on this disease.  Also, reading through the posts in these discussion boards have inlightened me to many aspects of the disease.  However, it seems that Cholangiocarcinoma, and especially the Intraheptic form, is not normally diagonosed until stage 3. 

Been in Africa, I now have a concern when I see any man with a heavy-ish middle and want to ask him if he enjoys camping, has travelled in non urban areas or stayed in any places where water and meat purity may be questionable... and if his answer is yes, to suggest that he requests a MRI scan be done of his liver.  Should there be a liver fluke, it can be dealth with before it becomes cancer.  Although the medical people may not fully agree with me, research shows that parasites could be a cause of ICC.

As more awareness is needed regarding CC, are there any early signs which one should look for, yet go unnoticed, that could detect this cance in stage 1 or 2?

18

(22 replies, posted in Introductions!)

Hi there Judith.
So good to have another member of the family living in the southern hemisphere!  I am in South Africa.
One thing I have learnt from this wonderful group of people, is that their advice is practical and is given from personal experience.  That helps alot.  So often people want to offer advice out of the kindness of their hearts, but do not know what they are talking about, because this cancer cannot be compared to others.
When this group suggests a medication, I check Google to see what it's make-up is and then ask my local pharmacist if we have a similar product in SA.  "Trade names" of medication is not always the same throughout the world.
All the best with your husband.  My husband went through different tests between October 2013 and diagnosed with ICC on 29 December 2013.
Looking forward to getting to know you better as we share out life experience together.
Stella!

19

(6 replies, posted in General Discussion)

Thanks.  Will ask my pharmacist if these are available here (or similar products).

20

(6 replies, posted in General Discussion)

Seems almost unfair that I as a Type 2 diabetic, have received a good report at my annual check-up today.  HBa1C is continuing to come down, blood pressure very good during stree ECG and cholesterol almost normal (best in 10 years).... and yet my husband is so ill....

21

(6 replies, posted in General Discussion)

The internet has become a great source of information and the people of this discussion board are quickly becoming good friends.  There are so many questions but not many thorough answers available and so I am finding the discussions so informative.
Question:  I read lists of symptoms of Intrehepatic Cholangiocarcinoma..but how does one deal with them?
1. When my husband turns yellow, is there something that can be done to ease off the jaundice  (which comes and goes)?
2.  The continuous nausea that is keeping him away from his job... he has tried just about every pill and suppository on the market... and any relief is short lived.  Any natural remedies / suggestions?
3.  Are swollen feet a symptom of the disease?  Although not painful, the swelling is very obvious.  I have been told that it is poisoning from constipation, which he has as a result of the Oxy medications he is taking.
4.  At times he has trouble swallowing.  Medication in large capsules has to be opened and sprinkle of his breakfast oats or in yoghurt.  What causes the swallowing difficulties.
5.  It is a week since the end of his radiation treatment.  Could any of these symtoms still be side affects of the radiation?
Thanks for you assistance.

22

(4 replies, posted in General Discussion)

The internet has become a great source of information and the people of this discussion board are quickly becoming good friends.  There are so many questions but not many thorough answers available and so I am finding the discussions so informative.
Question:  I read lists of symptoms of Intrehepatic Cholangiocarcinoma..but how does one deal with them?
1. When my husband turns yellow, is there something that can be done to ease off the jaundice  (which comes and goes)?
2.  The continuous nausea that is keeping him away from his job... he has tried just about every pill and suppository on the market... and any relief is short lived.  Any natural remedies / suggestions?
3.  Are swollen feet a symptom of the disease?  Although not painful, the swelling is very obvious.  I have been told that it is poisoning from constipation, which he has as a result of the Oxy medications he is taking.
4.  At times he has trouble swallowing.  Medication in large capsules has to be opened and sprinkle of his breakfast oats or in yoghurt.  What causes the swallowing difficulties.
5.  It is a week since the end of his radiation treatment.  Could any of these symtoms still be side affects of the radiation?
Thanks for you assistance.

23

(12 replies, posted in Introductions!)

Hi there
Some solid advice was given to me 2 weeks ago.  My husband was diagnosed with ICC in December 2013.  The advice given was that I must take over control of all legal and financial matters.  I have begun to do so.  I do involve my husband, who is not well enough to do these things himself.  I have requested a list of all his insurance policies, and communicate with his medical insurance and have seen to the Will. I am also helping him manage his business.
I would suggest that you write a new Will and then read through it with him.  Have 2 friends (not family) present when both of you sign it.
Have your attorney draw up a power of attorney document, giving you signing rights if he is not well enough to make decisions.
You do need to take control, even if it seems unfair to him.  As a matter of fact, you will be helping him and taking care of the future of yourself and your children.
It is tough.  I have terrible emotion times.  I feel awful but know that it is necessary.
Also, ask him questions and write down answers (obviousloy not blatantly in front of him).  Think of anything you may need to know when he is gone. 
I hope this information helps and encourages you. 
Know this, everyone on this forum knows and understands what you are going through.  It is good to have people to talk to who understand the emotions and decisions you face.

24

(10 replies, posted in General Discussion)

Oh my, there is so much to learn.  Up until November 2013, my husband was leading a normal life, involving traveling for business and managing a very busy company.  Now he is sickly all the time and barely manages 1/2 hour at the office once a week.  He is complaining about severe lower back pain which shots down his right leg.  Sounds similar to the diabetic neuropathy that I suffer from  (I am Type 2 diabetic).  One would think that the slow-release and fast acting Oxy meds would ease this but no... now he is taking general pain meds as well. He seems to been taking an awful amount of meds throughout the day - pain and other - how much can his damaged liver cope with? 
He will not put the lights off at night, so I am having to learn to rest with the bedside lap on.  But I dont mind, as long as he is comfortable. 
I dont know if my husband will ever work again. 
I was expecting improvement after the radiation which finished on Tuesday last week - am I expecting too much too soon?

25

(10 replies, posted in General Discussion)

Update:  My husband became dehydrated from vomiting, was very disorientated and could not speak properly, and ended up at the ER on Saturday.  He was admited and came home yesterday.  He has completed his 10 sessions of radio-therapy.  The oncologist says that is all he will be getting as his liver cannot tolerate more.  Currently they have him at stage 3 but if the next scan shows that the spots in the lungs are tumours, it will be changed to stage 4  (and he will have chemo).  Basically all they have done is try to shrink the tumour to releave the pain.  He had to face the reality yesterday, that there is nothing more that can be done for him.  This is not a cancer that can be cured.  We need to try to build him up so that he can get back to work.  Can anyone suggest how to increase his appetite?  A few mouthfuls of nutrientional shake and oatmeal are all he can manage.