Forum Replies Created
Thank you everyone for your kind words. I am still in shock that it took a mere 7 weeks for this illness to take my mum. I’m still dealing with tough times. The hospital sent mum a survey to fill in on her treatment with them. Obviously a clerical error but jarring none the less to receive this. I also have a sibling who is not happy that I was made executor of the estate so I am having to deal with legal dramas too. It’s all hideous but I am a strong person who will emerge from all this. I just wanted to say thank you to the kind voices of comfort and support I found in here. You are all amazing xxx
My dear Mum went for her forever sleep this afternoon. Daisy was the name she always called me because I reminded her of a flower. Formal diagnosis and admittance to hospital on June 17, passed just 7 weeks later.
Thank you to the beautiful souls who give their time here, because of you I was able to best care for mum and advocate with knowledge. I know it enabled me to have the best care for my dear Mum.
God bless each and everyone of you.
My mum’s cholangio metastasised to her skull in a short time
Sorry for your loss Steven. My mum is clinging to life at the moment so I feel the pain you have suffered. I am glad your mum’s suffering is over. It’s a terrible way to beat cancer but she has beaten it. She will now rest eternally in peace and pain free. Take care xx
My mum’s first biopsy was negative but the next hospital we went to for a follow up biopsy suggested that the first biopsy was botched. Her second one confirmed the cholangiocarcinoma.
Mum eventually had jaundice but mildly. Her eyes went a bit yellow as did her skin but nothing major. She also had mild itching for a few days.
I was a bit cross with her doctor who did a blood test yesterday to see if her nausea was a result of her morphine dose. I didn’t know they were testing her as I wasn’t there, just saw the bandage on her arm later. I told the doctor that if he researched her disease he would know the vomiting was caused by biliary obstruction, proven when I stopped her food intake. Anyway, the blood test showed her kidney function wasn’t too bad so perhaps that’s why her jaundice isn’t too bad.
This video is no longer available
All the very best to you Beth, autoimmune diseases are not fun. I have one myself. Best wishes for your good health.
Thank you wonderful people. Mum has managed to tell me this past week her feelings on my care for her. It warms my heart that I exceeded her expectations and will be a lasting, heartwarming memory for me. I have had the knowledge to be the best carer I can by learning from this forum. You have all educated me and I thank you deeply for this. It’s enabled me to care for Mum in the best possible way and be prepared for every symptom. I’ve been able to ease her mind with knowledge gained in here. You are all wonderful and do wonderful things for people who are going through a torturous, frightening time in their lives. Well, it’s 7.15 am here in Melbourne so I’m getting up and heading off the hospital to sit with my dear Mum and hold her hand while I can xx
Mum is very close to death I feel. She just wants to lie in her bed in the dark with no noise. she has told me a few times now she wants it to end, she wants it to take her or she wants to float away. I told her it’s ok to go, to float away where cancer can’t hurt her anymore.
I use a towel to gently rub her skin where she itches and she gets relief from that. It’s not driving her mad at this stage but that’s probably due to the large doses of morphine and haldol. Mostly she lies quietly with her eyes closed now and her breathing has slowed right down. She is comfortable but wants her long sleep now. I don’t think there is any point bringing someone in now to be honest. She hasn’t eaten for a few days now, is only having the odd sip of water and has no energy at all. I keep her mouth moist with a sponge and lip balm. The only thing I find surprising right now is her urine output. She seems to be passing a good amount. It smells and seems to be brown but given her lack of food and drink, I thought she wouldn’t be urinating anymore. Weird!
thank you so much Rangani, those links were very helpful.
Sadly mum’s doctors and nurses have zero understanding of her cancer. They were discussing her medications yesterday thinking they might have to change them because she is itching. I had to explain it’s her disease causing the itching not the medication but they just looked at me funny. I kind of wish I had put her in the cancer hospital but I know our community hospital is where she wanted to die.
I have said to her doctor that I don’t want her given anything by mouth apart from sips of iced water.I also said ti to the charge nurse. I am going to see the nurse unit manager tomorrow and instruct her to have no food delivered to her room and see about getting something put above her bed head so visitors don’t feed her. I have visited a number of times now to find people feeding her jello – good intentions but it causes such distress not long after. Mum is left to suffer and I am left to clean it up.
Marion she has been given haldol I think and nothing is given orally anymore, only via a port in her tummy. Morphine and anti nausea meds are given via a driver.
Would you have a link to an article I can print out and show her treating doctor?
Thank you everyone, Mum is hanging in there. Her existence is heartbreaking. I’m thankful she is not in pain but this vomiting is heartbreaking. No matter how little she eats or drinks, she is vomiting up what the nurse called coffee grounds. Today she had a mouthful of jello and a few sips of water and has been vomiting non stop. They have tried many different meds but nothing seems to be working. I don’t know what to do anymore. I have told them not to give her any food as I think it’s kinder to do this than feed her and have her exhausted and miserable with vomiting. What a choice
Thank you very much Lainy and Gavin, your kindness and empathy mean a lot.
Mum has been on a driver for the past month, it has her morphine and a nausea med in it. She has other nausea meds and top up morphine into a port in her stomach. The lyrica and constipation meds are taken orally.
I am just stunned that 5 weeks ago today we were sitting in her oncologist’s office getting a diagnosis. 5 weeks! I know I will be forever thankful her suffering was short lived but the speed of this has blindsided me.
Thank you everyone. Mum slipped into an unconscious state last Saturday but has rallied for a few days. We think she is holding strong to make it to her birthday on the 23rd. I’ve planned a little party in the hospital for her and I think she will close her eyes and rest once she makes it to that. She is tolerating very little food now and is vomiting again despite many different nausea medications. Her bowels are not working and her urine is very dark. She is on 200mg of morphine now with 20mg top ups for break throughs. Also on lyrica for nerve pain and an anxiety med if she gets agitated. Her breathing is getting a little difficult and a little painful too. The speed of this disease is shocking. I truly think that if it wasn’t her birthday in two days, we would have lost her last Saturday.