1

(30 replies, posted in Introductions!)

Dear Kristi, I am so sorry for your terrible loss. My thoughts are with you. I lost my husband Mike in 2001 with this terrible disease. He was diagnosed in March and died in June, aged 57. I will never forget the feeling of complete hopelessness . Right from the outset we were told it was inoperable by the specialists at Nottingham and Derby and he was unable to come home from hospital because of the jaundice,  confusion and stent problems. Birmingham Liver unit tried to operate  without success. He never got as far as chemo which the doctors  felt was not really an option. After numerous bouts of septicaemia Derby transferred him to a hospice .He died four days later. I am still traumatised by the speed of his loss -this is such a wicked disease. My heart goes out to all the people whose lives have been torn apart by CC. I hope and pray that someone, somewhere can find a cure.

2

(25 replies, posted in Announcements)

Stacie,
Today I accessed the site for the first time and was amazed to see how many other people's lives have been affected by cc. I am particularly interested in development of research in the U.K. since it seems as if you're on your own once diagnosis is made. My husband Mike was taken ill with jaundice ,dark urine etc in March 2001. He went straight into the Derby City Hospital and at first they found nothing on the scans. Nottingham however reviewed the scans and diagnosed cc. Mike was told instantly by the consultant there was no treatment since radiotherapy and chemotherapy would not be effective and that he might live 6 months. He spent the next 3 months in hospital having stents constantly replaced and was also sent to the Liver Unit in Birmingham for surgery. They failed to operate successfully since during surgery they found it had already spread to the lymph nodes. He died after weeks of battling septicaemia, in a Derby hospice in June 2001. The whole appalling experience lasted from diagnosis to death in less than 3 months. Although medical staff were kind, we had no hope of any meaningful intervention. His death shook me to the core and it is only now, seven years later, that I can talk about it. If ANY help from specialist centres or specially trained doctors can be made available to families hit by this dreadful disease it would be such a leap forward. During the months of his illness and the years since I have felt totally alone in my experience of this disease. I have never met anyone else who has been affected so it is a comfort to discover that other people are coming forward demanding more specialised research and centres where people like Mike can be helped. I also felt that a lot was kept from us by the doctors since Mike was a lost cause. He was sent straight from Derby to the hospice when they decided there was no longer any point in treating the septicaemia with antibiotics.He was in the hospice 4 days and I was informed by nursing staff on the third day that Mike had only a day left to live. He died the following morning. This was without doubt the worst experience of my life, and my thoughts and prayers are with all those other families undergoing the same ordeal. The sooner this cancer becomes a priority for research ,the better.