Young Caregiver for mother
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Hi Jessica, great that they replaced the drain as it did sound like it had slipped. The fever and chills is usually a blood infection which seems to go with the territory. Teddy used to get them often and the ONC told me when he had chills and fever to just go right to ER. They would do a blood culture and put him on an IV of Levequin and by the next day he was so much better. It just seems to go with the territory. Glad that it all worked out and I hope Mom begins to see that you are doing a fantastic job and there comes a time when the parent needs to listen to the child, I know as I have played both roles in life. Best of luck and I hope things quiet down now for you both!
Thank you all again. Lainy I have considered that but my mother is a very stubborn woman lol. Tiah I am very sorry to hear about your mother, no one our age should have to carry this type of weight on our shoulders but it does make us stronger.
An update on mom: we were finally moved from the emergency room to observation where they decided to completely replace her drain as it somehow became dislodged inside. We were discharged not long after on Wednesday afternoon and she felt great for the rest of the night and into Thursday. Thursday night she began having fevers and chills after flushing the drain. Her doctor advised we come back to the emergency room, and it is now “technically” Friday, at 1:15am and they will be running all kinds of tests as usual to see what it could be this time. Her doctor suggested at first maybe something was pushed during the flush as all of the symptoms started right after but they do not believe the tumor alone would cause the 102 and rising fever.
Hi Jessica, just a hint for everyone. When you go in the ER front door you can wait forever no matter what the problem is. When Teddy would get an infection I always called an ambulance and they took him in the back door and he got immediate care. Made my life so much easier;
Hi Jessica. What an amazing and strong person you are. My mother was also recently diagnosed with CC and at 22 years of age, some days I struggle to cope. At the moment my mother is requiring emotional support more than anything, and is fortunate to not have too many issues with her chemotherapy, but at this stage she is also inoperable.
Having also lost your father to the horrible disease that is cancer, it is amazing you still remain so positive and are there for your mum. Best of luck and hopefully they can find out what is going on in the ED and get her back home to where she is comfortable, and possibly find her next treatment option.
Thank you all so much for your kind words it truly means a lot. We are from the Philadelphia area in south jersey and have also consulted with a doctor at USC for a potential clinical trial coincidentally by a family friend but with her progression and infections that is also no longer an option.
We are actually in the emergency room now because her drain that was placed 1 week ago began to leak at the insertion site when I flushed it. After 5 hours in the waiting room they finally gave her pain meds and 2 hours later were still waiting for scans to figure out what this issue could be.
My mother has definitely helped me to be the strong woman I am to fight this and it’s so nice to hear it from you all as well.
Hi Jessica,
Welcome to the site. Just wanted to join in with the others in welcoming you here. So sorry that you had to find us all and sorry as well to hear about your mum, but glad that you’ve joined in with us now as you are so in the best place for support and help and will get loads of each from everyone.
You certainly have had and do have now an awful lot to deal with and I hope that you have some support as well to deal with everything. Please know that we are here for you and we care so keep on coming back as much as you want to and we will help as best as we can. You are not alone in this now.
My best wishes to you and your mum,
Gavin
Jennifer….I too would like to welcome you. Already you have experienced much in your young age and I admire you for your strength and dedication you have demonstrated so far. Jennifer, not sure whether your Mom had a biopsy and if so, whether it is accessible for molecular testing. Perhaps you should discuss with your Mom’s physician.
Hugs,
MarionDear Jessica,
I am sorry to hear of your mother’s diagnosis, but happy that you have found this group. Please know that you have great support in this group. We are here to help in anyway we can. You are an awesome daughter for all you do, and I am sure your mother is so proud of you. I am sorry you lost your father, I can’t tell you how much I HATE cancer. Please keep us updated on your mom, and know that I am sending hugs and prayers your way.
MelindaDear Jessica, this is the best place to be for CC support but I am so sorry you had to find us. What a wonderful daughter you are and I would say your parents did a fine job of raising you! You have already been through so much first your Father’s cancer and now your Mother with this rare monster.
First I would like to advise you to call Mother’s ONC as she should not be having that kind of pain from a drain. It may have slipped or was placed wrong. With CC always report pain to the ONC as we can’t assume where the pain is coming from.
Next I would advise you to get a 2nd opinion as we are big believers in more opinions since this is such a rare cancer. Bottom line though is always the patients comfort. Energy is needed to fight this and should not be used up in pain as well.
We are all here for you and you are not alone. We are family. Below is a site you may find helpful and please keep us updated on your Mother as we truly care! Hang in and hang on!http://cholangiocarcinoma.org/newly-dx/
Hi everyone. My name is Jessica I am a 24 year old caregiver to my mother who was diagnosed with cholangiocarcinoma in the beginning of February 2015. It started out with the klatskin tumor just in the bile duct but has now spread to lymph nodes and what we once thought were blood vessels in the liver has now turned into two tumors. We have had a lot of bumps along the way, constant infections, in the hospital for a weeks stay once a month, chemo being put off because of infection and courses of antibiotics. She just had a drain placed last week and is experiencing abdominal pain but that comes with any surgery.
My father passed away in June 2014 after a history of brain cancer. My mother and I were his 24/7 caregivers from October 2013 until the end, although he spent a lot of time in hospitals then a long term facility which led to hospice.
My mother’s strength through that and her strength and positive attitude now is very inspiring. I am a realistic person so I know the outcome is not good, especially when surgery and radiation are not options and she can barely finish a round of chemo without getting an infection. I’m hoping I can find some comfort here as so many of you have similar yet different stories.
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