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The day before my husband died he stopped eating and drinking completely.
At that point I called my children I just had a feeling.The night before he also passed stools that were black and tarry (sign of internal bleeding) and he had a very swollen abdomen and less swollen feet and ankles. Unlike Joyce’s experience there was very little sign that he was about to die in the few minutes before. He vomited and then stared at me very intently and then looked off into the distance as if he was seeing something else, and then fell back on the pillow and died.
Don’t hesitate to call your children, they would want to be there and he would want to see them.
Be strong and all my best wishes are for you and your family. May your husband have a peaceful death with all he loved around him.
I have noticed that it mostly carers who come to this website. This accords with my own experience. My husband didn’t want to do the research or even talk about options – except when forced to. His way of dealing with it was to pretend that it wasn’t happening. I think everyone has their own way of dealing with what is happening and pretending it isn’t happening, is just another way.
My husband was treated in the UK (The Royal Free and UCH in London) and it is almost impossible to get any ‘new’ treatments for cc. There are too few cases in the UK (600 per year) so there is no research info for NICE to approve specific drugs. If you want this treatment then I would say your chances of getting it on the NHS are nil or less. I think you would have to work with a private oncologist who is prepared to get it from the States.
Sorry not to have something more positive to contribute,
PatriciaI’m sorry I made a mistake. I was looking at something else as well and got the two confused.
PatriciaHaving been through this myself I believe that what my husband wanted was just for me to be there with him, to make him comfortable, talk to him, massage his feet which were very swollen, be calm. We had to stop doing things (looking for treatments cures etc) and just be there showing the love we all felt for him. What he wanted was ‘loving touch’ (his words) – an affirmaiton of his importance to us all.
My thoughts are with you at this very difficult time.
PatriciaMy husband had PDT at University College Hospital in London. The general view is that PDT is not a cure but a way of keeping the bile duct open by zapping cells in the duct. They are hoping to conduct a trial at UCH, perhaps you should ask your doctor if he can get you onto the trial.
…..but there have been some amazing results with some people.
Very very few people have amazing results. I think the only person on this site who is post five years or even two or three(??) is JeffG, who gave you very sound and realistic advice/information.
Show your mother all the love you can. Be with her, play music read, play games look at photographs, whatever it is that makes her feel peaceful and cherished. Death comes to all of us; what I believe we want at the end is dignity, the presence of those we love and peace.
I think the point is that without the bile duct the cancer cannor recur in the bile duct. The question that can’t be answered is whether or not the cancer has been seeded in other places, that are not visible on scans. Cancers in the region of the of the liver are
particularly difficult, as the liver is involved in so may of the process of the body so spread cancerous cells very rapidly. That is why the chemo is used to kill off any residual cancer cells.I would also recommend that you build up the body’s natural defenses with milk thistle, IP-6 (?) omega 3 & 6 and foods high in anti-oxidants.
My husband was diagnosed with cc after he became very jaundiced. They tried to open up the bile duct prior to an operation but were unable to do so. He had the operation with the jaundice.
Be aware that there is no certainty that an operation can be done until they actually start the operation. My husband had CAT scans. MRI and laporoscopy before his operation. They all were negative – no spread to other organs. So the prospect looked good. Unfortunately once they open him up they saw that there were multiple modules on the omentum (covering of the bowel) which were not detectable before. They therefore decided not to proceed with the op.
After my husband’s failed operation they tried three times to open the duct (ECRP)
I personally think that these three attampts did more harm than good and seeded the cancer in other places. (No evidence at all for this just an intuition)I wish your uncle good luck. Leeds is a centre of excellence for liver surgery so he is in good hands.
Oh Kate! I have only just seen your post.
I am so sorry about your loss but there is consolation in knowing that your mother was such a character and lived her life by her own values and beliefs. What courage to take off the Greece to live in a caravan and just be what she wanted to be.
Last week I read, ‘Life is a period of luminosity between two long periods of darkess.’ It seems that your mothers life was particularly luminous and her light shone on everyone around her.
My warmest regards to you and your family.
Patricia.
Joyce,
I wish your husband relief from his awful symptoms and enough peaceful time to be with family and friends. I wish you both strength and courage in these difficult days.
PatriciaToday it is a year since my beloved husband died of cc. The pain doesn’t diminish – time doesn’t heal all wounds- , but it comes less often.
My sincere condolences to you Carolann on the loss of your mother and I wish you all strength in the coming months.
I think all of us have asked ourselves when did it start? did we miss something?
I asked the doctors in the hospital and they guessed that my husband had had it only for a couple of months before he presented with symptoms of jaundice and inability to eat.
I don’t believe that he had this cancer for a long time. I noticed two things in the month before he became ill. 1. he was sleeping more than previously. I said as much to him, and thought to myself ‘I wonder if he has cancer?’ and then dismissed the idea. 2. he lost a noticeable amount of weight on his buttocks but I thought ‘that’s what happens as we get older’. He also noticed that his belt need to be tightened a notch. This was all in the month before he became jaundiced. His rate of weright loss was very rapid.
I was interested to read what Ron Smith wrote that there are different degrees of aggressiveness. I think that my husband had a very agressive form. It came on suddenly and certainly the weight loss was very rapid and he survived only six months from diagnosis.
He had no chemo but I am convinced that chemo would not have significantly affected the outcome.
PatriciaI have seen a site where two brothers both in their thirties both contracted cc.
Not proof by a long way but with a very rare disease for two people in the same family to have it, does suggest a genetic predisposition.
In fact a google search shows that the family is that of mybrosister, who posts on this site. The link is http://www.band-of-brothers.ca
Patricia
