Mother stage 4, no blockage or jaundice – any others?

It seems to me that everyone’s symptoms are different and there is no ‘usual’ way. My husband’s decline at the end was quite quick and painless. Since he didn’t have any chemotherapy he didn’t have any of the side effects. Ascities – they treated by drainage, rigors (severe trembling) – I just piled many covers on him until the trembling stopped, fatigue – I don’t think there is anything that can be done about that.

One week before he died my husband was still having business meetings.

Thursday before he died we went to see an alternative doctor. He was able to walk short distance only to her surgery. When he came home he was feeling more positive and he asked for a fried egg and beans, to try and build up his weight. (At this time he was skin and bone.) This was the last time he ate anything of substance. He climbed up the stairs to bed. At this point he was weak but alert and mobile.

The next day (Friday) he started to decline. He wasn’t able to eat or drink anything but he was awake able to converse and had a visitor. I guess I must have realised that things were nearing the end because on Sat I asked the children to come home and stay.

Saturday Sunday and Monday he ate nothing and was only able to sip a little liquid but he was able to talk, On Monday he had four visitors and was quite lively. His ascities had been getting worse and he was feeling uncomfortable. He hadn’t eaten anything since Friday and I was really worried. On Monday night he started to pass stools like tar, which I now know to be a sign of internal bleeding high in the GI system. Either a result of the tumour growing into the vein or maybe the single (low dose) steroids he took to stimulate his appetite, caused bleeding from a stomach ulcer, no-one will ever know.

On Tuesday morning he asked me to arrange for his ascites to be drained but because he wasn’t prepared to go to hospital I tried to arrange it at home. One minute he was talking to me and a minute later he died.. What I think – and don’t know – is that this internal bleeding in his already very weakened state, caused organ failure.

I don’t know what to say to you. if the chemo helps alleviate symptoms then clearly it is of value, otherwise …. Trips to the hospital must be exhausting in themselves not to mention that effects of the chemo. If I were in your shoes I would want to find someone who understood about caring for the dying and try make her last weeks as comfortable as possible.

I hope this has been a little help and my thoughts are with you and your mother.

My husband had ascites for the last five or six weeks of his life. They drained 7 litres and then a couple of weeks later 5 and on the day he died we were preparing to drain again. The fluid build-up became quicker. I think one indicator of ascities is the hardness of the swelling. My husband’s stomach was stretched like a drum prior to the drainage.
Draining is not without risk, as the loss of so much fluid is a shock to the system and may cause blood pressure to fall to a dangerous level. Also I believe there is a loss of proteins and minerals which the body finds hard to adjust to.

I agree with your decision to make her quality of life the best it can be at this stage.
My husband was regularly visited by an nurse from India whom he met in the hospital. She was experienced in nursing cancer patients but also had a different and more indian approach to terminal illness. In addition to nursing care she would sit with patients listening to them when she could, soothing them and making them as comfortable as possible. In UK hospitals this is not usually a part of hospital care. Too much emphasis is placed on doing things to patients and not enough on being with them. She stressed the importance of family being around and expressing their love for the person who is dying; this she sees as a validation of the life they lived and a great comfort to a person who knows their life is at an end.

I don’t think that you are a ‘downer’ for all those who are fighting. They are at a different stage and make different choices. At some point my husband made a choice not to go into a hospital again, because his experiences were all so negative. I don’t think the outcome would have been different had he gone back into hospital. I think it would have just prolonged the process, increased his discomfort and sense of isolation. You can read about his end in the In Rememberance section – A good death.

I hope your mother enjoys your love and care and the presence of her family and the joy of her granddaughter and her final days are filled with love and compassion and an easeful death.

I am glad you found this board, although I will echo Peter’s statement that I’m sorry that you had to find the board.

My friend didn’t have any stents placed in the ducts to help open them up. I don’t know if it’s because she had intrahepatic bile duct cancer or not. But I did notice that she started to appear a bit jaundiced towards the end. (in the last 3 months)

For the following information, please keep in mind that I have ZERO medical training. This is just what I picked up along the way during my friend’s fight. There’s probably some truths intermixed with some erroneous information. I imagine the best policy is to remain silent, but I remember the helplessness feeling of just wondering “when.” so, I ‘ll take my best stab: Is she retaining fluid in her abdomen? If so, then she has ascites. I cannot tell for certain, but your original post seems to imply that the doctors said she does not have ascites. Obviously they should know better than anyone on this board. However, if the doctors just haven’t said that word yet, there are some signs you can look for. If they prescribe a diuretic, or they are draining fluid from the abdomen, she likely has ascites. If the diuretics work on relieving the swelling, then she’s not as far along. (relatively speaking…maybe several months) However, if the doctors have started draining the fluid regularly, you’re probably looking at weeks. If the swelling is not fluid induced, then I imagine the swelling is coming from the swollen liver, which will grow to compensate for the reduced operating capacity. And I’d guess that you’d be looking at many months in this scenario.

Your mom, you, and your entire family is in my thoughts and prayers.