Mom starting to experience more pain. Not sure what to do
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Hi Sharon,
One day at a time indeed. Thats good to hear that your mum accepted some daily medication for the first time and also that the doctor is going to keep a closer eye on her with regard to her pain with more frequent visits. My dad also takes Lactulose, in the morning and evening.
As to the vaccines, he will be getting his seasonal flu jab soon and he also got one last year. The doctor at day care also recommended to him that he take up the swine flu jab when it becomes available at his local surgery, which should be soon and he said he will be taking it, he has to see his own GP for that. I’ve never heard of the pneumonia vaccine that the doctor mentioned to you, perhaps someone else has.
Maybe this thread will help if you are looking for more information regarding major treatment centres for CC.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126
Glad to hear that your mum is feeling a bit better and I hope that you see some good results soon with the confusion and memory loss.
Best wishes to you both.
Gavin
We went to the doctor today. As suspected her bloodwork showed many counts were too high and too low. Her bilirubin is high but we know she will always probably have some level of jaundice. The key was the ammonia level which along with all the other symptoms she exhibits, confirm that mom does have hepatic encephalopathy.
The good news is that it is not so far advance that the symptoms can’t be managed and even – hopefully – somewhat reversed. She starts lactulose and prevacid tomorrow but she still refused the prescription pain medicine as today she is feeling better again and wants to keep trying to manage with tylenol when she needs it. Her doctor has set up more frequent regular visits (every two weeks) to keep a closer eye on mom’s pain management and has also ensured bloodwork be done at least once a month.
Does anyone have any input of vaccines? Mom had her regular flu shot today and will have the H1N1 shot next week. The doctor also mentioned a pneumonia vaccine given her compromised immune system.
The doctor mentioned that suggesting hepatic encephalopathy was helpful and was glad I had done so. I told her about this site and discussion board and how it’s been such a source of information for us and also suggested she research some of the more well known centres that treat CC.
We also touched on briefly the fact that it is likely that the hepatic encephalopathy will continue to progress and that it may eventually lead to coma. But – one day at a time.
Today was a good day. We had such a lovely visit and mom made a major leap forward in accepting some daily medication for the first time.
Now let’s hope we see some results and her confusion and short-term memory improve some.
Thanks again all of you for the support and advice. We might have never gotten to this diagnosis without the responses to my first post
Hi Sharon,
Rant away! I’m sure that it helps! Like Marion’s husband, my dad had the chills also and he seemed to get them more regularly last year but he hasn’t had any for quite some time. They seemed to last for about 15 minutes or so and then just pass, very strange indeed. At first they were a bit scarey as we didnt know what they meant, then it just came to be something else that we had to deal with and we knew they would soon pass.
As to your mum feeling fatigued and generally unwell, my dad gets this quite a bit, then like your mum had today, the feeling suddenly passes then it’s back to all smiles again for a while. I remember one of the first time that happened and my dad had a pretty rough few days. Then in the middle of the night mum heard dad in the kitchen banging about. She got up to see what was wrong, and dad was raiding the biscuit box as he was hungry! He said that he felt great and was all chatty and stuff which was a complete turnaround from the previous few days!
Like you, I want to understand as much as I can about all of this so that if I can help my dad in any way then I will, especially if it makes him more comfortable. But I would also say to you to enjoy the good days as best as you can. We missed out on some family celebrations due to dad having a bad day, my little cousins 18th birthday, his 65th birthday and my mum and dads wedding anniversary. So try and enjoy to the max the good days and it sounds like today was a good one for your mum.
Good luck to your mum for today and my best wishes to you both.
Gavin
I so understand your need to find out more, more, more, Sharon – I’m going through the same thing. Balancing that with just “living” is very hard for me, too, at the moment.
Good luck with the appointment. Jxx
Sharon…. My husband also had rigors (chills) and so have many on this board. They are temporary and are rarely accompanied by a fever and generally last for a few minutes, only. I found it to be helpful to smother my husband with tons of blanket and just to wait it out. Also, for the doctor
Very worried about tomorrow’s appointment. Have been doing a fair bit of research on hepatic encephalopathy. My mom is exhibiting so many of the symptoms. I am very worried that her bloodwork results will show elevated ammonia levels and clinch the diagnosis. However, there seem to be some treatments which might potentially offer her some relief, so that would be good.
Mom was feeling good today but she did have a rough weekend – more fatigue and generally not feeling well. She also asked us to get her antacids as she felt she had acid reflux. Also her bouts of “chills” are increasing but she’s not running a fever. Her nurse Debbie has been dropping by more often – she’s treated a few CC patients which is of comfort to us all, given how rare it is.
Then this morning mom was feeling good and is back to smiles, up and dressed, eating breakfast before my sister arrived at 9 a.m. And only one midday nap. Her great grandson Issac came by for a visit too which she just loved
I am finding it hard to balance just wanting to enjoy the good days with a huge, compulsive need to understand what “might” happen. But I am so worried about finding out about something too late that may make her more comfortable.
Ack!!. Thanks for the freedom to rant a bit.
Hi Sharon,
Glad the posts helped you a bit and I’m glad that your mum seems to be a bit more open to the idea of some meds. You’re doing a great job in taking care of your mum. I hope the docs app goes well.
Best wishes to you and your mum.
Gavin
Thanks everyone for the input. Lisa, that website is excellent. I read through the tips for caregivers which provided me with many questions for the doctor and for my mom. My sisters and I have been approaching her steadily this week about the fact that she might want to consider medication for pain relief. Yesterday, my sister said she seemed more open then she has in the past so I am hopeful she will listen to her doctor on Tuesday.
Gavin, I went back and read some of your posts about your dad and mom. They provided me with insight and also renewed my engery to help my mom through all of this.
I’ll post again on Tuesday after we go to the doctor.
Sharon
Hi Sharon,
I agree with the others in that trying to get medication for your mums pain would be a good idea. I do hope your mum will listen to what the doctor says regarding pain and accept some help here.
As to the pain in your mums upper right quadrant, well my dad started to get a pain in that area not long ago. It’s not a constant pain but it is another one to add to the list of others he gets, lower back, right side and stomach area. He is taking Solpadols for his pain, 8 a day and they seem to be working, they have codeine in them. He also suffers from short term memory loss and some confusion every now and then and has done for a while. Hopefully your mums blood test results will give you more insight as to what may be causing this. My dad also gets very fatigued and spends a lot of time in bed, some days up to 20 hours or so and has done for some time now. Like you, I wish we knew the answer to this fatigue issue, but I know for dad that a lot of the side effects of his meds are tiredness.
Lisa,
Thanks for the pain website link.
Best wishes to all.
Gavin
Great website, Lisa – thanks!!
Sharon – my thoughts are with you. I do hope your mum will accept help with her pain. Not only is the pain affecting her daily life, it’s also very hard on you to have to see her in pain in addition to everything else you have to cope with.
Jxx
Lisa…that is a very informative site and it would be a shame to have it lost in the threads. Would you mind posting it under: websites? I will gladly do it but, it will be nice to have your name with it.
Best,
MarionSharon…I agree with Lisa. The upcoming visit with the doctor will be informative. I looked at the website suggested by Lisa and it gives many good hints and tips. Of course, others may share more information with you also.
Good luck on Tuesday and best wishes,
MarionSharon, I think it is extremely important that you can find some pain medication that will work for her. There is hope that she does not have to experience pain. I found a website called cancer-pain.org that addresses many questions regarding cancer pain.
My mom is starting to experience more pain. It is generally in her upper right quadrant. Up until today, she has been feeling ok and dealing with it either stoically or with some tylenol (fyi my mom is very proud of the fact that she is not on any medication at all at age 79, however is now thinking that she needs some “help”).
Because she is palliative and not actively seeking treatment, we’re not up on what might be out there to help her. I’ve been reading through the past discussion threads looking for some thoughts.
We are seeing the doctor on Tuesday and will have blood work results. Her doctor has talked to mom about pain management in the past but I think that now, finally, my mom might be ready to listen.
If anyone has any advice based on your own experiences, I’d be very grateful to hear from you.
Brief history:
Diagnosed Mid July 2009
Large tumor (over 6 cm) located in the bile duct in the liver, spread to capilliaries throughout the liver; could be elsewhere but we stopped looking for spread when mom said no chemo or radiation
Stent bypass inserted and working well so far (knock on wood, say a prayer)
79 years old
Experiencing confusion and short-term memory loss since diagnosed
Very fatiguedThanks so much,
Sharon
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