My name is Jude Norley – Losing my husband to Cholangiocarcinoma.
January 28, 2019 at 2:32 pm #14513
My lovely husband Graham passed away on 30th October 2018 and I am still shocked and saddened by the speed and ferocity of this terrible disease. He was just 71, fit healthy and full of life. Early July his urine turned a bright orange and that was the start of the horror. There is no family history of cancer. We eat healthily, exercise and enjoy life. Everything escalated after the diagnosis. Graham was going to have chemotherapy but contracted sepsis and a few other complications that prevented this going ahead. The majority of clincial staff were excellent but some had no “bedside manner”. Graham had several procedures to alleviate the Jaundice and an abscess on his liver. I felt that, although the hospital was supposedly doing its best the obvious “no hope” constantly hung in the air. The deterioration was rapid and distressing. Certain agencies paid lip service to us but, I felt, werent there when we needed them on the day of his death – which was at home.
I am still shocked and saddened by the speed of this illness – having never ever heard of it prior to Graham contracting it.January 29, 2019 at 10:15 am #14514
Welcome to AMMF’s forum and thank you for sharing Graham’s story.
I am sure others will comment and share their experiences with you and if we can be of any further help please get in touch.
JulieFebruary 8, 2019 at 10:23 am #14523
I’m so sorry for your loss of your wonderful husband . It is beyond words . I to lost my husband age 51 to this disease 6 months post diagnosis . I to felt let down by the nhs, Cholangiocarcinoma is rare and the health care professionals struggle with early diagnosis, my husband was treated for a urine infection. I have been a nurse for thirty years and I knew only to well , he had no symptoms of a UTI . Like yourself I felt a lack of good communication and caring bedside manner . He also died at home and I felt that could have been managed better . Hopefully someday this awful cancer will get the funding it deserves to aim for better treatment and early diagnosis. Sadly it is to late for us . It is anything but easy half of you is missing . You feel empty and desolate . Try to take small steps each day . I send you my love and thoughts
Margaret xxFebruary 26, 2019 at 3:33 pm #14557
Thank you Margaret for taking the time to post your message. I do hope things are improving for you. I keep busy but am empty and sad inside. I am looking forward to the Conference in May to be around people who have experienced the same as myself and will understand the horror of this cance.
xxMarch 5, 2019 at 7:59 pm #14571
Hi my name is Fleur, five weeks ago I took my husband Gary to our local A and E, he was admitted to hospital and four days later they diagnosed Liver tumours, he had BUPA health care and so 8 days after diagnosis we were sent to see a specialist at London Bridge Hospital he ordered a biopsy and this was done two days later, Gary came home that weekend for three days before we had to go back to see the specialist, when we did go back his jaundice was so bad and he was in so much pain he was admitted to hospital and they ordered a stent to be placed into his biliary duct. This was his only chance for any type of Chemo, he had the op and then went on to develope sepsis and pancreatitis and was immediately placed in ICU, ten days later I was told that the results of the PET scan and biopsy had infact made the diagnosis Cholangiocarcinoma and that there was no treatment available only palliative, five days later on 1 March my loving wonderful husband and dad to our two amazing children passed away.
This was all within five weeks, my world had been blown apart by this silent and deadly cancer, I am so angry I had never heard of Cholangiocarcinoma before.
i saw that you posted about a conference in May, I would love to come, please could you give me more information.
FleurMarch 6, 2019 at 1:19 pm #14575
Welcome to our forum and thank you for contacting us. As I have spoken with you and emailed the information requested I would just like to say again how sorry all of us at AMMF are to hear that you have recently lost your husband Gary and in such a quick time. If we can be of any further help please do not hesitate to get in touch.
With kindest regards
P S You may wish to re post in Introductions – New Topic to allow a greater number of people to see your post.
You must be logged in to reply to this topic.