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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
Por favor publique sus preguntas en Español y un intérprete le va responder.
Posts found: 16
Thank you all for your kind words and prayers. My darling husband passed over in my arms yesterday morning. He was the bravest man I have ever known with a spirit so strong to the last moments.
My family are all around me, I feel blessed to have their love and support, especially my grandchildren who have been so natural with their grief.
My granddaughter Jacq turned 11 today, she said she wished granddad had made it to her birthday as she knows he would have got up through his pain to say a special 'Happy Birthday' to her.
I asked her to pick a star that would always be shining brightly especially for granddad, Jacqueline said "we already have picked our star nan" it is you.
Love be with you all,
Dear Karen, I know what you are experiencing, my husband is in a similar state to your mum but thankfully the nausea is under control, I am so sorry that you have had so much sadness. May God be kind and take our loved ones sooner rather than later. The agony of watching them suffer is more than the heart can bear sometimes, I have to be so strong as I am caring for my husband and my daughter who has several problems, my love goes out to you, Fran Australia
I thank you all for your kind words and prayers. Colin is no better, his doctor came in today and gave him extra mophine, he feels that Colin will pass in the next few days. I am now resigned to the fact that we will not have Christmas together, I would not wish him to linger in this awful state, the pain and loss of dignity are so hard to watch, I know he has given up and I just wish him peace and eternity without pain, I love him so much I want him to go, love Fran
Thankyou all for your prayers and kind words, I am glad to say Col has not had any high fevers for 3 days now but is very fatigued. His Doctor has been wonderful and explainedthat the fevers are caused by the tumor. Colin has such a strong mind, that up until Wednesday he was still getting up each morning and going about his chores in the garden. He now has accepted that his body cannot use any energy apart from what the body needs to survive.
My husband is such an amazing man with a strength that I admire, it has been a hard lesson for him to realise he can no longer do the things he loves to do in the garden and now is allowing me to take on those chores.
His Doctor has said he may not make it to Christmas, he has been a Doctor for 25 years and has learned never to make pridictions on how long someone has because the human soul is an amazing thing and it will decide when the time is right, love Fran
my dear husband Colin is fading away before my eyes, I have called the ambulance once this week as he was delirious with a high fever, they were marvellous and stayed until we had things under control.
Last night his fever spiked again and once again he was delirous, panodol didn't touch the fever this time and my daughter and I had to get him into a luke warm bath until his temp dropped.
His Doctor has told me this morning that he doesn't think he will make Christmas, so please everyone out there please pray that these temps will stop spiking and we can have one last family Christmas together, he has been the love of my life for 39 years and I am so scared to think of life with out him but I know it is almost time to let him go, Fran Australia
Richard I will be saying a prayer for you and your dad, good luck Fran
Dear Bazel, I am so sorry to hear your dad lost his fight with CC but as you say he is with God now. I am sure you will find the holidays hard this year with out him and only time can heal the lost you feel.
You will be in my thoughts and prayers, love Fran
Hi Bz, sorry to hear that your dad is not doing so well. Sometimes I think it is so much harder on us the carers as we want so badly to do what is best for our loved ones and all we can do is support them best we can.
My dear husband is having no treatment as there is none offered in Australia, maybe if we had private insurance they would be trying different chemo's on him but I have been told by so many doctors that they have not proved to be of any benefit on quality and quantity of life. I have read so many stories on this board where some people have extended their life but others have gone down hill so quickly after commencing treatment.
It is so much up to the individual that has this desease to make the choice and up to us their loved ones to support what ever they decide.
I had a very bad weekend with my husband, he is losing weight very quickly and now is only about 58Kg he was 76kg when he was diagnosed in March 07. He will not give in to this illness and still tries to carry on as normal. Saturday he was up for about 2hours doing his chores around the yard when the pain hit. He was in bed all weekend curled up in a ball, he hasn't been able to eat much apart from a bit of porridge when he gets up. I put a morphine patch on which took about 12 hours to kick in. Thankfully he is not in pain now but very tired and quite weak. Last week he took a morphine capsule 20mg and it shut down his bladder and bowel for 36 hours, thankfully the 12.5 mg patch hasn't done that. I am now trying to find out what food supplements are availiable as a drink as eating solids is out of the question, the pain suffered after is too bad.
I have almost felt shellshocked this week at the speed this nasty cancer has hit my husband in the last 2 weeks. I am sure he feels the same, he goes to do something that he had no trouble with a couple of weeks ago and now he hasn't got the strength, it breaks my heart to watch him fade away before my eyes.
I really hope that your dad improves, as I have found that my husband has bounced back so many times whilst battling CC, sorry for going on but I just feel that you are going through similar emotions to what I am experiencing and it helps to have this forum to share our feelings and experiences.
Forgive the spelling errors, Fran Australia
Dear Bazel, I wish you luck with your dad and your mum. Yes prayers are good, I will put you in mine, Fran
Dear Lisa Ann, thankyou for your suggestions, we are going to our GP today who is really trying to help Colin with this horrible disease, so will ask to try those meds, thanks Fran
my husband is experiencing severe abdominal pain right and left side, finds some relief laying on his back. He cannot take morphine as the side affects are so bad. He is on slow release panadol but this isn't touching it, any idea's would be helpful, he is on no chemo or other treatment for CC, thanks Fran Australia
Dear Jules, I am very new to this sight and still not very sure how to use it.
I have just started the journey you are on. My husband was diagnosed March 2007 with a Klatskin tumor and I am treasuring every moment we have.
My heart goes out to you at this sad time and I am so sorry that you are feeling so much pain but venting is the only way to get through this and what a wonderful site this is for allowing us to do that.
I can only tell you how I coped when I loss my mother suddenly in 1994, she lived with us in Australia and was holidaying in the UK when she fell ill with flu and died within days. I can still feel the pain from losing her, she was such a wonderful person and so full of love. I felt all the emotions you are feeling especially anger which I took out on my dad as he was the one that wanted to do that one last trip to the UK. I so regret that anger now and realise that it was just grief creating that pain and anger.
My one savior was meditation and I used to spend 30 Minutes every morning talking to my mum and crying until I got to the stage where I could feel her energy and I found if I was in the garden tending to her flowers i could feel her wonderful energy in my hands, the love that I felt then and still to this day when tending her flowers is what got me through.
I hope this will be of some help in understanding what you are feeling, I will send you love and healing in my meditation everyday, love Fran x
Hi Sarah, my husband was diagnosed in March 2007, he is having no chemo or treatment other than milanta and pariet for reflux.
He is not depressed but has discomfort in the solar plexus the same as you. He also feels that his stomach is not emptying. This is the CC or klatskin tumor causing these symtoms as everyone seems to have the same thing whether they are on chemo or not.
Colin has lost 16kg since January 07 and this is our biggest worry, I would like to know if you are having the weight loss problem, he is losing about 1kg a week at the moment.
We live in Australia and they have told us that Chemo does not improve length of life enough to warrant suffering the side effects. Maybe you have better treatments in America.
Fran with hugs
Dear Bz, my husband has a klatskin tumor starting in the gall bladder going into both bile ducts and both sides of the liver. In Australia no treatment is offered as it has not proven to extend life. It seems very different in the US I find it hard to believe how many different treatments are offered.
My husband can be so well one day and just by over doing it of eating the wrong thing he will end up in bed with bloating pain high fevers for a couple of days and then the pendulem swings the other way and he is back in the garden working and living a normal life. It is all about finding a balance, my husband has an amazing outlook and doesn't ever think of himself as being sick, I think it is harder on me as the carer watching him fade away, he has lost 16kg since Jan 07 and though he staberlized after having 2 stents put in in March he seems to be losing weight at about 2kg every couple of weeks or so. I find Bowen therapy helps a lot with his bloating as I am a bowen therapist. I do the reflux moves that are used on babies and find that helps on accasion if you know of a Bowen therapist over there.
Hope this helps you, Fran
thanks for your quick reply, when my husband was in hospital he was in the top liver hospital in the world, with several top specialists. There was a conferance on at that time. I am afraid it is managing the symtoms that has become important, quality of life and knowing what to expect. We live in Australia and being a small population there are no trials for this cancer.
Yesterday my husband Col ate more than usual, a couple of sweet mincemeat pies in puff pastry was his treat and it put him to bed for 20 hours and he feels very unwell today.
No one can give us a time frame of how quick this tumor grows, thank goodness it is slow growing, we are now planning a big family Christmas which we didn't think was going to happen but I am feeling much more positive now.
Col has days where he suffers high temps and has the shakes and then sleeps for hours but normally bounces back after a couple of days and is good for a week or so.
My husband is 70 and feels that he is very lucky, he has had a good life with a wife and family that love him so much and he is not afraid to die. I must also add that because my husband is a heavy smoker no doctor in Australia would even attempt to operate on him and he refuses to give up smoking as he has smoked since he was 9 growing up in foster homes during the war in England.
I hope to be able to manage his symtoms better by being on this site.
I really need a board to express my emotions as I am being so strong for my family that I feel I have locked my grief inside and need support from others that are facing the same thing,
thanks for listening Fran.
Hi my name is fran, my partener of 37 years was diagnosed with a Klatskin tumor March 2007. It is cancer of the gall bladder bile ducts and liver. He has been told that no treatment is available for this tumor. No one seems to know what to expect or how long he has got. He has days when he has high fevers shakes and bad pain in his gut. He bounces back after a couple of days and it is as if he has nothing wrong with him. Eating has become quite difficult as most foods seem to upset his digestion.
It seems like I am on an emotional rollercoaster as we have no idea what to expect. Col is amazing and just takes each day as it comes and carries on as normal when he can, his mind is extremely strong and nothing seems to get him down, I would be interested to hear if anyone else has this type of tumor.
Posts found: 16