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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
Posts found: 6
ScottsMum - Thank you for your kind words and giving me strength when you are going through the hardest part yourself! I really appreciate that.
I am so sorry your family has had to suffer so much this year - with the passing of your sister-in-law at such a young age and now to deal with your own mother's illness.
It is surprising to be "recommended" no treatment when the cancer is not even advanced - but I guess considering your mom's age and medical history the Oncologist doesn't want to send your mom's system through the ringer and chemo would most likely do that. How about natural therapies - or even meditation/visualizations? I know it seems a bit off but I find that what works best is whatever the patient believes in. When my mom thought the chemo was working she'd have a "great" day, a lot of it was mental.
You're right that each day truly is a gift and that is all that matters- not tomorrow or next week but right now. Just being there for your dad and your mom is the best thing - and you're already doing that. I hope you are finding time each day to take care of yourself - it's a lot to have to caregive for both your mom and your dad.
Keep us updated with your mom - I am constantly thinking of you and your family! Just remember, anything's possible.
Ironbark - Thank you for taking the time to write a response and share your own experience. I am so sorry you are having to deal with all the ugliness that comes with this disease as a caregiver.
I know exactly what you mean by the rollercoaster of emotions - it truly is cyclical. I found that a certain emotion would hit me at certain times everyday - by 6pm I was full of hope, then it would wear a bit before bed and so on...it is truly exhausting.
My mom spent her last month in the hospital - my sisters and I rotated shifts throughout the days and nights so that she never spent a second alone - I mean every second - the nurses considered us staff because we took over everything from bed shifting to bed pan. And each day we received worse news - I know how discouraging it can be to see a disease take over - no matter how hard you fight. What made it bearable was the fact that every morning I could visit her and everyday we found many things to laugh about. Also the fact that anything is possible - we truly believed until the very last second that things could turn around because honestly sometimes they do.
You seem to have the right attitude - and I think the green ribbon is a great idea - hopefully the colour would be bearable for all! But I am willing to do whatever it takes to get this cancer some serious funding!
I hope you are taking care of yourself - keep us updated with your dad. I am thinking of you and your family.
Gavin - Your quote is infamous amongst these discussion boards - and for good reason - this really is the club no one wants to be apart of but are glad they found.
I am so sorry for the loss of your father - from what I have read, you sound like a wonderful and supportive son and person and your father was lucky to have you.
I know it hasn't been a full year since the passing of your father- but I was wondering what you have found to be most helpful in getting through the days? It hasn't even been two months but I feel the exact same as I did the day my mom passed.
Thank you all for your kind words and taking the time to share your experiences. It does help to know I am not alone at this terrible time.
Kathy - I saw on other posts that you have surpassed 14 months - congratulations. That is truly wonderful news. Everyone's body really does work in it's own way and it's so great to know that yours is responding well to treatments.
I am sorry you are so close to my mother's age and a mother yourself, having to deal with the weight of this disease. I only fully understand it from the daughter-perspective so I won't even begin to pretend I know how you truly feel but your positive attitude shows real strength and determination and I really admire that. I hope your kids are okay and have their own forum to cope with the emotions of everyday. I am thinking of you and your family.
Hi Margaret and Tom,
Attitude is half the battle and it seems as though both of you have that covered well! I'm sorry the chemo has caused some setbacks - my mother was on the same chemo combo and it took her for a bit of a ride - blood and platelette transfusions became the norm. I'm not aware of your husbands treatment history but I thought I'd suggest you speak to your Oncologist about taking a pill called Xeloda (ze-lo-da) in combination with Gem - it is less toxic on the liver. Just a thought - may be easier on your husbands system.
My thoughts and prayers are constantly with you - it's a hard battle but it can be won.
My mother was diagnosed with CC at the end of May 2010 at the age of 64 -her cancer was stage 4 and had metastasized throughout her liver. Her cancer was inoperable and treatment was offered to 'extend life'. She was treated with Gemcitabine and Cisplatin but could only get through 1 1/2 rounds. She passed away on Sept 7 2010 after a series of complications. She was by far the strongest person I've ever known - her tolerance for pain did her a disservice in this case as it took a lot for her to go to ER. My sisters and I were relentless and dove ourselves into every piece of information out there - together with our mother we fought as hard and long as possible.
I've joined this group/website because I think it's important that we exchange our experiences and knowledge about CC. Although a rare cancer, it is very lethal and unfortunately shows up in later stages. No family should ever have to experience the horrers of CC, however I strongly believe that with enough research and resources we can change it's prognosis.
I know that the only medicine that truly helped my mother was hope; doctors need to realize that it is sometimes the only thing a patient has left and it truly can do wonders. So to anyone going through this journey, do not forget that each individual and their cancer is different and can react differently to treatment. Medicine is an art not a science. I wish everyone affected by CC the best and don't give up!
Posts found: 6
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