My amazing Mum was diagnosed with Bile Duct (Cholangiocarcinoma) early January this year. She had been physically sick for a few months prior, was tired a lot and had what she thought was indigestion (pain under where her bra sits at the top of her tummy). Just before Christmas she went to the doctors who after examining her tummy etc asked her to have some blood taken on Christmas eve, this was followed by a scan in early January. By this point it was clear she had jaundice. She was very yellow, skin and eyes, could not eat anything without being sick and was very itchy.
Mum was offered a stent to be put in at the base of her liver or bile duct which they put in via endoscopy called an ERCP. This worked wonders as it only took a couple of weeks before the jaundice cleared up along with the symptoms and she was able to eat again and put back on some of the weight she had lost. From this point she said that she felt normal and did not feel like there was anything wrong with her.
When first diagnosed she was told that she had months to live (they could not tell us how many) and that she could have kemo but this would not cure her only add additional months possibly. She made the decision not to proceed with that because she did not want to be sick and she would rather have good quality months left rather than having treatment and feeling sick again.
We spent the next few months making as many good memories as we could, we went away to centre parc for a week holiday with my children and my brother and his children, we had family photos taken, spent lots of time as a family just being together. My Mum was also keen to get all her things in order including her funeral.
Its now July and my Mum had an infection about 4 or 5 weeks ago which infected her blood, she was taken into hospital and put on antibiotics. After a week in hospital she came home but since the infection has reoccurred as they could not pinpoint the source of it. She has chosen to have end of life at home and the antibiotics she has been given to take at home have made her sick again and so she has now refused to take any medicine. She has barely eaten anything since getting the infection and is now very frail and weak. They were able to give her a patch for Oxycodone to help with the pain. Yesterday they gave her a syringe driver as she kept needing injections to top up the pain relief.
My heart is breaking to see her go so downhill since getting the infection, she is the best Mum anyone could wish for. I hope this blog has helped anyone starting this journey so they might know what to expect. Please, please just make the most of what time you have left with your loved one.
