Not ready to say goodbye to my mom…

JDH – my Dad was diagnosed in January and it was also deemed inoperable. He’s been doing chemo since, and has his first scan on July 14th. It will be a scary day for us all. Like others have said, it is a crazy rollercoaster ride, with more lows then any of us would like. I also have a baby of my own, but am not ready to say goodbye to him. The thought of it breaks my heart. However, after enough time, you will get stronger and realize that all you can do is enjoy every single second that you have with him, and be thankful for those precious minutes since many people never get them. I still have my days where I just want to curl up in a corner and cry (and sometimes do), or where a song on the radio will set off emotions in me that I thought I had under control, but for the most part, I just spend as much time with him as I can, and be thankful for the days he wakes up feeling “okay”.
I am thinking of you and your family — I really hope they get the stent in, as others have said, since I’m sure it will make her feel better, and I hope the chemo helps to slow the monster down and give you all more time.

Jen

JDH,

Welcome to our “family”. I mean that. You will find you feel more like a family here than anywhere else. Say what you want, ask what you want. I found some of the most helpful people ever, on this site. Information is power.

Seek that second opinion (and more and more if need be) until your questions are answered. There are other treatments when surgery is not an option. Did the dr. tell you why surgery was not an option? placement of the tumor(s), size, etc. First thing is to get that jaundice under control with the stent. I’m praying that will be an option and be successful.

2nd, start getting informed, both on this site and through the doctors. Was radiation mentioned as an option? Some members here have said chemo worked for them and others have said radiation worked better. Each person reacts differently to each treatment option.

Don’t give up yet….and we’re all here for you too.

Linda Z.

Hello and welcome to our family-JDH. We are so sorry to hear about your Mom.
I agree with the things said above so will not repeat but please don’t give up hope. I would also suggest a second opinion. First things first and they need to get your mom stented. I know the Jaundice is daunting to say the least and makes you feel there is no hope at all.
If the present doctor takes his time to stent, take her to ER at another hospital and most likey she will get stented. They will not send her home like that. Then you start knocking down the walls one by one. Ask the doctor why she is not a candidate for surgery. And just so you know there are people here who chose to do nothing and have beat the odds for a couple of years now. Like Kris says, who knows what developments are right around the corner. Surgery is the ONLY thing to do in some cases not all and in some Chemo is the way to go. Perhaps you should also ask your doctor if he has treated many CC patients and that will help you decide what to do. Take a deep breath, we are here for you and soon it will all come in to focus and then the fear will subside and like Marion said the fight will kick in. Please keep us posted.

I join everyone else in welcoming you, and I would like to add that the stent will make your mother feel sooooo much better. When bile can’t drain and goes into your blood, it doesn’t just cause jaundice, it makes you feel HORRIBLE– itchy, nauseous, sick, and weak. I went through two months of that. They couldn’t give me a stent, but instead I now have an external bile drain to a bag on my side, and that makes a huge difference in how I feel. So I agree with Marion, you should try to get them to place a stent as soon as possible.

Wishing all the best to you and your mother–

Kristin

My Dad was diagnosed in April and like your Mom it is inoperable due to location, artery/veins. My Dad was first told he’d got a few months to live but then another hospital said he could be treated with Chemo which will hopefully keep it at bay. They can’t say how long for as no one has an expiry date, so we take it a day at a time and each day my dad is a survivor.

We have had a rollercoaster of a ride the last few months. After being admitted into hospital for what they though was gallstones we found out he had CC. Jaundice was his only symptom. After failed attempts via ercp and pct for a working stent Dad was transferred to another hospital where they managed to fit a metal stent. After a few weeks his jaundice went and he regained the weight he lost whilst in hospital. We finally get a date for Chemo and his bilirubin decides to rise again and Chemo is cancelled. We are now waiting for Dad to have his stent unblocked next week.

Once your Mom gets her stent she will feel so much better.

We try to stay positive, they said his tumour was small and luckily decided to grow in a place so he became jaundice. For it’s size, if it had grown anywhere else he would not have had any symptoms and would have not been spotted so early.(just bad luck it grows by the artery!!) We were told it’s slow growing and my Dad through all this has felt well, still has a big appetite, and manages to do everything he did before he was diagnosed. So we focus on these, the positive things to help us get through it. Our family have always been close but now we are closer than ever. I am an only child but the support from aunties, cousins and friends has made me realise how lucky we are as a family to be close.

This site and the people on here have helped me get through the last few months. I stay positive for Dad and so far he is positive too, but when I have my off days or worries I can’t burden my parents with about CC then I know I can come on here and someone is there for me.

Sending hugs and best wishes, we will all fight and get through this together.

Welcome to the site. We are a great group full of support, knowledge and advice. Not to mention we are all very beautiful inside and out.

The problem with cc is that it is often detected in its later stages. That makes treatment difficult. That said, everyone is going to pester you to get second and third opinions because this is such a rare disease that doctors are often scared or unsure how to procede. Many people here have been told no to surgery by one doctor and yes by a fourth.

Chemo response will be measured by scans. I felt worse on chemoradtion and my doctor only giggled and said it was the treatment, not the cancer that was causing problems. So you wont be able to tell just by how your mom feels. Some blood tests offer insights, but are not 100% reliable.

No one knows how long we or your mother has. Some people live years some months and there is no way to tell how your mother will do. Keep positive and laugh and play. It might not make your mom better, but she sure will feel better.

Hang on. This is a rollercoaster of a cancer. There will be highs and lows, but our members will be here for you.

Kris