daisy1
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One month ago I joined here as Mum was being admitted to hospital. She took a turn for the worse last night and is now unconcious and heavily medicated. One month from diagnosis to this. Thank you to everyone who replied to my questions, I don’t think I will be asking any more
I had a meeting with her doctor today and was told Mum’s liver is swollen and that her fluid is malignant. They are not going to drain it at this stage as it’s not affecting her breathing. I have asked them to keep an eye on her legs as they are swollen again and leaking. Thank you so much for taking the time to write all that information for me Karen, I appreciate it very much. I make sure her feet are elevated and I check them each day.
She is becoming quite jaundiced now and they said her albumin levels are lowish. I guess her body is slowly shutting down as the cancer spreads like wildfire through her body.
They gave her huge doses of lasix and her swelling is greatly reduced today. I am very thankful as her stomach was so tight I thought she would burst. Her legs have gone down a lot too but look terrible as the skin didn’t retract so she has loose, wrinkled skin now. She is a little confused so getting information about her treatment is a little hard. I can’t be there for doctor’s rounds as I have 3 kids I need to get off to school at that time. I will get all the answers on Friday at my appointment.
Thank you Marion, I have given a copy of the power of attorney to the staff and they have put it in mum’s file. I have a meeting in two days with her care team.
I am getting concerned about the fluid leaking out of her legs. It’s getting worse as is her stomach swelling. She looks like she is going to burst it’s so big and tight
During my hospital visit with mum yesterday, I noticed the nurses taping sanitary pads to mum’s lower legs. Her legs are so swollen that fluid is actually leaking out of them. Is this normal? Should I be doing anything about this?
I hate that the hospital do not keep me informed of anything. Mum has told them repeatedly that I am her power of attorney and she wants them to discuss everything with me and not her as her brain is not functioning properly.
Thank you Marion. I have a loud voice when it comes to my mum and I will use it. I believe the doctors are avoiding me as they wish to move her to a residential home and I demanded she stay where she is. The residential care facility is a user pays facility whereas the hospital care is free. Clearly they are basing her care on money and not her best interests and as I am fighting them on this, I feel they are avoiding me.
Mum is happy and comfortable for the most part and I am determined to maintain the status quo. They have upped her morphine to 80mg so I’m guessing the ascites is getting painful or it could be the tumours themselves that are more painful. I’m not sure.Thank you, I guess as her tummy is not causing discomfit they are just leaving it alone and concentrating on pain relief. I think the problem with communication is that she is no longer under the care of oncologists, only geriatricians who just deal with end of life comfort.
thank you both for taking the time to reply to me. I can’t get answers from her doctors now as they are not oncologists. When her oncologist told me they could offer no treatments at all, only symptom relief I bargained with them to move her to our local community hospital (no cancer unit) which has given Mum much happiness. It’s not quite home but close enough to make her happy. The doctors here are geriatricians with no cancer expertise. They can’t comment on her cancer, only in vague terms. They are not even draining her stomach of fluid, just increasing the morphine every few days and keeping on top of nausea meds and constipation meds. She is also on a steroid which has plumped up her face. She looks well externally but I know steroids can do this. I can’t see the state of her body internally so I rely on the doctors to help me only they either can’t or won’t as they’re not oncologists. Clearly they don’t think she has long if the oncologist has discharged her from their care but I guess me asking “how long” is the something only time will answer.
Lynn, my mum’s oncologist told me that they found cancer in her skull. She has no pain there so no symptoms as such, just pictures on a scan. I don’t know what this means in terms of prognosis but would really like to know. The not knowing kills me, I need to feel prepared for what life might dish out to me.
Hello Lynn, rotten way to meet someone but hello anyway!
This whole saga has me so confused. Two weeks ago I thought mum was dying and after being in hospital, she looks really well. I know this is just her exterior but she’s resolved the constipation, has no nausea or vomiting and her pain is being managed most of the time. She looks healthy yet they tell me she must stay in hospital and that patients usually go downhill fast. At the moment she’s going uphill so I am so torn emotionally.
They told me they did a brain scan and whilst it wasn’t in her brain, they did see spots on her skull. Does this mean it’s in her bones or just her skull? Does this mean her prognosis is even worse? I have so many questions and want brutal honesty which I can’t get from her medical team as I can’t ask in front of mum. Is there anywhere in here I can search for answers?After another meeting, it was decided absolutely that there would be no chemo. It won’t give either quality or quantity so what’s the point of putting her through it. They won’t release her home either so I have negotiated with them to send to her our local community hospital (her house is around the corner) which will give her peace and quality of life. They have a small palliative care unit and she will have loads of her friends and neighbours popping in to visit and make her life happy as it can be under the circumstances. I first heard of cholangiocarcinoma a couple of weeks ago and there’s no hope. How can your world fall apart in two weeks?
Hello Marion,
The hospital she is in has an oncology ward and treatment centre. She is cared for by an oncology team. They have given her 3-6 months and no chemo as it would decrease her quality of life and not increase her quantity. Unfortunately it has metastisised to her liver, possibly pancreas and they are looking to see if it’s gone to her lungs and brain.
So far she has had two biopsies, 2 ct scans, 1 xray and will have a brain scan today to see if there is a spot on the brain causing the nausea. They cannot find a blockage on any of the scans. She is so much better since being in hospital – they have stopped her nausea and vomiting which has enabled her eat full meals, her pain is being managed better and although her constipation is still a struggle to treat, she has had a couple of tiny BMs. They are going to wait a couple of days to see if her big meals she’s keeping down, get processed and she has a bigger BM. She’s been taking all sorts of laxatives and hopefully they start working soon.
I just want her to have quality of life from here on end. I knew, after reading up on this evil disease, that her time would be short. Her symptoms appear to be end stage and not early stage as I first hoped.Mum was admitted to the oncology ward at our hospital last night. At this stage they are looking for symptom relief so they can start chemo. Her feet are terribly swollen and they are not sure of the cause of her nausea. It could be pain meds or it could be that she has a spot on her brain. She will be having more tests this morning. She doesn’t have jaundice which is a good thing but I am concerned about her lack of bowel movement. She has multiple hard lumps in her tummy that we can feel but the doctor thinks it may be pieces of poo floating around. I wasn’t sure what to make of this as I thought the bowel was in one are and I can feel these lumps from one side of her stomach to the other.
Can someone please tell me what the stages of this disease are? Is there a timeline for symptoms?I am about to take her to hospital for a direct admittance, just waiting for the phone call to say the bed is ready. Took her to the oncologist today, confirmed diagnosis of cholangiocarcinoma but I don’t have any further information. Was too scared to ask in front of mum who doesn’t handle things well. I have no idea what stage, what her expected outcome is or anything else other than it’s not operable. Feeling sick to my stomach. Would like to know what to expect from here.
