Distraught
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Dear Jtoro,
I also had guilt and wondered what I did to get this cancer. It finally went away and some hope and gratitude have taken its place. I know that I will never be grateful for getting cc, but I am grateful for the opportunity to live each day to the fullest, to take care of relationships that mean so much, to know how blessed each day is, to make amends and to always say I love you. My days seem sweeter and my priorities are different. If I were to die unexpectedly, I might not have realized all these things….so in some warped way …. I am a better person.
By the way….I am 42, diagnosed in Dec. 09, successful liver resection and cancer reoccured in March 09 to my lungs. Stage IV but living large!! Hang in there, my prayers are with you.
MelindaDear Jtoro – My husband was FINALLY diagnosed in early August and given 3 months. He is still going out on many days. He suffers from weight loss, shakiness, swelling, some pain, food not tasting good, poor memory and concentration, and many other things. We take comfort and hope from the fact that he goes out shopping (he rides a scooter) and some days can be up for several hours. I don’t think we will lose him in the very near future, but each day is a surprise and a roller coaster ride. It seems that hope is the greatest factor in his ability to do things. I really think he will be active until near the very end. He pushes himself pretty hard. Best wishes to you and your family. Blessings, Susan
Jtoro,
My sister is 34 and is a single parent to a 7 year old boy and an 8 year old girl. She was diagnosed in April and in June they gave her 6 weeks to live. Here it is October and she is still alive. She struggles also with how much should she tell her children. My niece asked me several months ago in private if her mother was going to die. I didn’t know what to say, so I smiled, gave her a hug, and reminded her how much her mother loves her. I pray for strength for you and your wonderful family.Jtoro,
I can relate to how you feel about your family. If you use the search function at the top, you can see some of my previous postings about my family. A few things that I would recommend to you is: don’t be afraid to ask your Oncologist for some medication help with the anxiety. I did and am taking Ativan as needed which has been helpful because I was a wreck at first and have slowly gotten better. Secondly, I have found a lot of comfort in writing letters for my kids and family on important dates in the future. I’ve been lucky enough to survive longer than anticipated at first so I’ve been able to open up some of these letters and share them in person. I was able to put a lot of thought and effort into sharing important dates only in letter format ahead of time (for example, for my kids’ baptism, graduations, etc).
The other thing that you need to realize is that not everyone knows how well they will respond to treatments or what kind of developments will be made in the near future or even the near past which are becomng available. When I was diagnosed (mets to peritoneum and the primary) I was only given 3-6 months because the peritoneal mets were extensive. But they were wrong and here I am nearly a year later with no evidence of the peritoneal mets on imaging any longer. The very thing they thought would get me responded so well to chemo that it isn’t visible anymore!
I was diagnosed when my wife was 7-8 months pregnant and we had a 2 year old daughter at home. We spent weeks out at Mayo Clinic away from our daughter and it was a very difficult time for us. I sympathize with how you are feeling and will keep you in my prayers that the treatment will be effective for you and that you can find a way of coping and sharing with your children when you think the time is right.
All my best to you and your family.
Rick
Jtoro,
I have asked every doctor I’ve seen what caused me to get bile duct cancer. Was it something I did or didn’t do? Every single doctor has told me no. One doctor said it was just, “Bad luck.”
Kathy
Hi Jtoro,
Like all the others here, I want to welcome you to the best place for information on this cancer and support there can be. You will find that no matter what it is that you seek….basic information, treatment suggestions, what worked for some, what didn’t, doctor suggestions, support, humor, friendship from those in the same situation, someone to lift you up when you have just had that awful day….whatever it is you seek, you are in the right place.
I am 53 with a 5-1/2 year old son, and I was diagnosed with CC in Mar 09 when I complained of ulcer symptoms and finally decided to do something about it (after about a year). I had NO other symptoms. I too went through the phase that I may have done something that caused this, but I KNOW that is not true. Some of us are just prone to certain things, be it a genetic thing which might make us more susceptible to getting cancer or other illnesses. If your cancer was breast cancer, would you say you may have caused it? I doubt it. This cancer is very hard to detect and most of the time until it is very advanced. We can only hope that the medical field will work harder on earlier detection and more ways to treat it.
As Kris (devoncat) said, she intends on being around longer when “things come down the pipeline”. And living to the fullest for as long as you can is what everyone can do for their family. Tell them how much you care, do what you need to do for them for the future, and focus on the living, not the illness and dying. We all will die someday, but it’s today and the “living” part that really matters.
All my best for you and your family. My prayers and thoughts will be with you. Come back often.
Linda Z.
Hi Jtoro,
The first thing my Dad said to me and my Mom when he told us he had CC was “sorry”. This still upsets me that he said this and those words will haunt me forever. I immediately said “We will fight and get through this together” and that’s what we are doing.
As someone who’s parent is going through this I would never want my Dad to feel he is to blame, and I’m sure your children feel the same.
My Dad was told originally he’d got a few months and no treatment was available in April, well the few months have come and gone and treatment is going to be available and will hopefully start soon. Like Lainy said no one has an expiry date stamped on them. Please try and stay positive, I know it must be hard but I know it helps me when my Dad is positive, it rubs off on each other, and this will help your children too.
Best wishes to you and your family
Hi Jtoro,
Welcome to the site, although I am sorry that you had to find us all. And I am sorry to hear of your diagnosis. Please try and not beat yourelf up over this as none of this is your fault. You did not go out and catch this, you didn’t do anything to cause this to happen and you are not at fault here at all. You were not to know that you had CC and that is common for many of us. My dad was the same, he had no symptoms, led a healthy lifestyle and was fit and active. Then the jaundice appeared and about 4 weeks later he was diagnosed with inoperable CC. There was no way that he or I could possibly have known what he had before the jaundice appeared. And even then, it wasn’t until he had been tested for a further 3 weeks before he was given his diagnosis.
Please try and stay positive, as who knows what lies ahead. We are all here for you so please keep coming back. You are not alone here and we know and we care.
My best wishes to you and your family,
Gavin
I am glad your son has someone he can talk to and trusts that is removed from the situation so can offer some perspective. In awhile, you might want to ask your son again if he has any questions and then ask how he thinks your daughter is doing. Children will say things to each other, voice their fears and insecurities that they would never say to their parents. He might have insight into how your daughter is doing.
Your children will pick up that things arent as good as one could hope. Leave the door open for them to talk.
Kris
What I did say to my son, 17, if you have any questions I will answer them if I can. He said no. I then cried a little and he wrapped his arms around me and we both told each other how much we loved each other. I offered for him to go to counseling with me, but he said he would rather talk to his running coach that he has a mentor relationship with. I don’t think my daughter could handle anymore info. Now, but everyone I look at them I fall apart.
Jtoro…I would like follow everyone in welcoming you to our site. You have already been given such expert advise from our great members and I would only like to emphasize that NO ONE HAS DONE ANYTHING TO CAUSE THIS CANCER. There simply is no early detection mechanism in place. Dr. Lenz may have mentioned to you that the majority of patients receive late stage diagnoses of Cholangiocarcinoma. The current statistics have not yet been analyzed (it takes many years to compile such data,) but I am sure that it will show for significant improvements to have come about. I believe currently, more attention has been given to this cancer than has in the previous years and more is yet to come.
You hang in there. Stay positive and continue to reach out to the fantastic members on this site. We are with you, all the way.
Best wishes,
MarionYou might have missed it, but the CC Foundation has our own wonderful Dr. Giles who answers our qestions. A member asked how to talk to the kids and here was his answer
http://www.cholangiocarcinoma.org/ask.htm#question5
1) you have not ruined their lives as this is NOT your fault 2) you do not know the future. Nobody does. Your path may be different than someone elses. My doctor basically told me I should be dead now but that I look no different than when I had my reoccurance 18 months ago. I am at 3.5 years since diagnosis, and I am not going anywhere anytime soon…that I know. What my doctors think and what the statistics say might be different, but I know that NOBODY is a statistic and that includes YOU. We can know what will likely happen, but not what will happen. Who knows what side of the statistic you will fall? 3) You tell your children with love if you can and you think it is best. I just know if I was 17 and my mom had cancer and I knew the symptoms, I would be googling like a mad woman. Perhaps telling them will offer some relief in that there will not be this big secret. It is obvious you love your children and I am sure they love you too. Perhaps if you feel it is right, the family could gain strength, love, understanding and support from one another.
Kris
How can I tell my children? My daughter is attached at the hip to me and
now I have ruined their lives by getting with this disease? How will they survive without their mother?Kris, I just read your post to Jtoro—
I think that you are marvelous and I have read your posts to other people and also the “What I hate about CC/Pet peeves” and it’s you who has made me feel a bit better and given me help when I’ve been really low.
I admire you for your fortitude and strength of character. And for making me laugh at times.Jtoro, please know that you are not alone—and take to heart what Kris has writen–I certainly have. I have finally realized that whatever time I have–I cannot waste it by worrying and making myself ill/frozen with fear….instead of living each day with intention and focus on the lovely times and people in my life.
Snezzie
Dear Jtoro,
Whilst I’m sorry you have had to find this site, you have come to the best place for advice and support.
My Dad was diagnosed with CC in April. His tumour is inoperable and hopefully when they can sort his stent out he will be starting Chemo Gem/Cis soon. Dad’s only symptoms were jaundice and at first they thought he had gallstones.
It’s a rollercoaster ride, with many different emotions felt. My Dad is staying positive, and has the attitude there is always someone worse off. I think this positive attitude and determination is helping him. Of course he must have dark and scary moments but if he does he never shows it, something I really admire about him. He had colon cancer 9 years ago, and it was touch and go for a while, 3 operations, chemo and radiation theraphy over 12 months but he kicked that cancer and is determined to kick this.
At the moment he is doing well, he’s eating as normal and going about his day to day life. The last few days he’s developed jaundice again, just as he was about to start chemo!, so our rollercoaster is going down at the moment but I’m sure once his stent is unblocked the rollercoaster will go up again!
I agree with Kris, your children are at the age where they are old enough to know a bit more. You will fight this all together but you need to be honest with them. Yes it’s scary, yes it’s devasting but each day is a blessing, time spent with family and friends, and whilst some days are going to be bad, some are going to be good too. Take it one day at a time and try and be positive and strong.
Sending big hugs and best wishes
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