jmoneypenny
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Dear Belle,
I have been following your sister’s story and I am so sorry for all that you, your sister and your parents are going through. it seems to me your sister has an adverse reaction to many drugs, and that is making her suffer. Whatever you choose to do is the right decision, but if there is no hope left, I would opt to not give her antibiotics if it will be traumatic for her. At this point, it seems the goal is just to keep her comfortable, and antibiotics may not do this, from what you said.My mother was on antibiotics for an infection at the end, and I broke her out of the hospital and stopped antibiotics because it was beating down her spirit to be there and we just let nature take its course, at hospice at home. She died two weeks later. We can never be sure if the infection killed her or the cc, but it really doesn’t matter – it would have been a matter of days or hours, the disease was so advanced. I’m just telling you this so you don’t feel guilty if you choose not to use antibiotics – and if you DO choose them, that’s fine, too. Each case is different and whatever you choose is done out of love and respect for your sister.
My heart goes out to you and I wish you all the best,
JoyceHi Irene,
I don’t have any authoritative answers, but my mother was symptom free and had no bile duct blockage, and they said it was because she had INTRAhepatic cc, the kind that is in the bile ducts that are inside the liver, as opposed to the bile ducts outside the liver. Hope that helps, for what it’s worth.
Best of luck to you!
JoyceRank,
I didn’t know about the black stool indicating bleeding at the time my mother had it – we thought it was just a result of the liver not working properly, since she had very dark urine for a long while before she had the black stool, and they said the color of the urine was a result of the buildup of bile and other products that weren’t being flushed properly from the liver. But by all means your dad should be checked out for internal bleeding – I wish I had known to ask about it when my mother had it. Thanks for that insight, Jeff.My mother had the distended pregnant stomach, too, and I was sure it must be fluid but the scans said it was all tumor. I’m glad your father is able to eat and isn’t nauseous, as the distended stomach can make eating difficult. I’d see if you could get some anti-nausea prescription just in case it does become a problem – I think the nausea is one of the worst parts of this disease.
I hope your dad’s symptoms improve – and I’m so glad he has a big supportive family. I’m sure he appreciates all you’re doing, though he may not say it. Hugs to all of you,
JoyceDebbie,
My heart goes out to you – I’m so sorry for your loss. This disease took my mother and best friend, too. We were so lucky to have such wonderful mothers. But that makes the pain of losing them so much worse. I hope you find some peace in these hard times.
-JoyceHi there Debrah,
What you and Jeff and Charlene are saying makes a lot of sense – and it’s so good to hear all this from the perspective of the cc sufferer, so the caregivers can understand a bit more what you’re going through. Maybe your loved ones feel they can’t talk about it with you because they want to be strong for you. Then YOU feel you have to be strong for them, and it’s a vicious cycle and no one ever communicates. I always put on the happy face for my mother and wouldn’t allow her to open up any communication about the end, because hope was so important, but of course she must have needed to get some worries off her chest and I regret that I didn’t allow her to do that. I simply didn’t realize. Maybe you can tell your loved ones and your husband that you need to discuss this, discuss your fears, and ease some of that burden you’re carrying all by yourself. I know they’ll be there for you, whatever you need, but people just need to be told what to do sometimes. Especially spouses! It’s hard for anyone to know what anxiety you’re going through if they haven’t gone through it themselves.Of course you’re worried sick, and I don’t blame you at all. I’m hoping for the best results possible and a clean scan tomorrow. Keep us posted and we’ll keep up a cheering section for you.
Best of luck!
JoyceDear RANK,
I am so sorry to hear how you, your father and your family are suffering. I cared for my mother toward the end and you can look up my posts about the end (search under jmoneypenny) and there are others who have posted under Palliative Care, I believe. It’s too long for me to go into again here, but if you want more specific info and/or an ear to listen to, you can email me at dotbaumann@yahoo.com. The problem with cc is that there are NO clearcut answers, and no one goes the same way. With some it’s sudden and relatively peaceful, and with others not so fast. Usually there is pain, but only toward the very end, and the pain can usually be managed with medication.People have had different experiences with hospice, also. I guess it all depend on the area where you live. Our hospice nurse came once a week and then for emergencies, but we only needed it for 2 weeks and I was lucky enough to have a LOT of people helping – I loved the hospice organization and the people were amazing compassionate and helpful. Other people felt hospice was not there enough for them, especially if they needed help with bedpans and moving their loved one, which may require more than one person. Look into what your local hospice offers. I personally believe that hospice at home is a great comfort to most people – instead of hospice facilities, which can be very nice, but still seem like hospitals. But if the family can’t handle all the responsibilities at home, hospice facilities are godsends.
Your father sounds like he is removing himself from this world, as my mother did: no TV or radio, no reading the paper, not much contact with people. I believe this is a natural occurence and I would urge you to tell him you love him as much as you can, even if he’s depressed and not very responsive to your affection. It’s a tough road he has to travel – and your mom too – and they might both benefit from some therapy, or a talk with your clergyperson. Of course, that goes for you, too – this is so much to have to go through.
I wish you the best of all possible scenarios and I send many hugs and love to you and your family at this heartbreaking time-
JoyceThat is just HORRIBLE and unconscionable! That doctor should be spoken to about his bedside manner. Doctors aren’t supposed to lie to you but they’re not supposed to make wild suppositions, either. I would see if his superior could be contacted about it, though it may do little good – my mother’s oncologist was horrible, too, but since he was the primo expert in GI cancer at NYU, nobody would hear any complaints about him.
My mother’s oncologist actually started out our visit by saying, “You have thousands of tumors – uncountable. I give you at most a year.” Very casual and detached. Then he said to us, ‘You want to see?” and showed us the computer imagery of the MRI or biopsy, whatever it was — and he seemed all excited to show us each little tumor. It was sickening.
It sounds like your dad’s oncologist is someone you can trust, and I’m grateful that you have someone like that. Doctors aren’t all bad, but some of them lose sight of the fact that they’re dealing with human beings and need to be reminded.
Best of luck to you – I hope the oncologist gives you a clearer and more positive picture.
-Joyce MHi,
I’m not a doctor, but from my experience, it could be stomach gases, and it could be fluid buildup in the abdomen (ascites), which is very common with cc. Some people have the fluid drained periodically, so you should see if that’s an option. It’s not always a bad sign, but it can be uncomfortable and a doctor should ascertain if it IS ascites or not and whether it should be treated.Best of luck to you and your family,
Joyce MDear Carrieann,
You poor thing – all that you and your family have been through! Anne’s advice about getting some financial aid is invaluable – maybe the hospital can help you, as she said. I know there are other people who have had help in this area, so they may answer more specifically.I lost my mother to cc when she was 64, my daughter was 4. My stepfather died 4 years before her and we were still grieving him, then my father died a week after my mother. So I know what you’re going through, somewhat. Take some time for yourself in any little way you can, and maybe see about getting some therapy – this is a lot for one person to handle, and it’s too hard to do alone. Do you have any siblings or a good support system, a shoulder to cry on?
My heart goes out to you and I’m hoping and praying your mother is a candidate for resection, which would make for a very positive prognosis. Keep us posted and we’ll send our prayers and good thoughts your way-
-JoyceDear Lisa,
So sorry to hear about your mother. I wish you peace in the trying times ahead. We’re here for you.
-Joyce MHi Larry,
Just wanted to welcome you and congratulate you for fighting the statistics and showing everyone that this cancer can be battled for 5 years plus! Your story is an inspiration and I wish you all the best.
-JoyceDear Lisa,
My heart aches for you – your mother’s situation sounds just like mine. Mom was also 64 and died two months after diagnosis. Please don’t feel so guilty that you can’t be there – I’m sure you’re trying your hardest, and a mother always understands and loves you, no matter what.As for your mother’s irritability, it may be a combination of depression (understandable!), medication side effects (underuse or overuse or just a bad reaction), and/or the cancer itself. I’ve heard that cancer can sometimes cause erratic and hostile behavior and moods – my father had it with brain cancer, but I’ve heard it can happen with any cancer but I forget the reason why.
I just wanted to say I feel for you and wish you and your mother the best. Feel free to vent here as often as you want (I know I’ve done it a lot!) You will find only support and compassion from this board.All hopeful thoughts going your way,
Joyce
Dear Belle,
I’m so sorry your sister is going through such discomfort. In my mother’s case, she was prescribed three different anti-nausea drugs, and some worked well at times, then at other times they didn’t so she’d have to take another. She just kinda randomly tried different meds and she did have one that worked better than the rest – I forget the name but I’ll post again if I can remember it. No one should have to go through such pain and constant nausea – it’s too terrible that she has to suffer like this.
Also, as Jeff said, nerves and anxiety can very definitely be a factor. My motehr took Xanax occasionally but it stopped working at the very end – something they said is common when the liver is not working well.
Best of luck to you and your sister – all my hopeful thoughts are being sent your way and I hope you find a solution.
-JoyceDear Sophie,
That’s great news! I know you’re scared – you’re only human, and I would be scared, too! – but the chances of recovery seem to depend so much on the ability to have surgery, so this is such a positive sign. Your doctor must believe there’s plenty of hope, and we’re all pulling for you. Best of luck!
-Joyce
