June 4, 2009 at 6:10 pm #29177snoopy1Member
I just wanted to put my two cents’ worth in – my younger sister was diagnosed with cc last July. She was succesfully resected in February and is doing well now, but she was devastated in July when she had to break the news to us that she had cancer – she was worried about putting that kind of burden on us! What it did for me, however, was allow me the opportunity to participate in this intensely personal fight for her life. I have been able to help her research information and be a caregiver when she had surgery. I would not take a million dollars for being able to be there for her if she needed me. Point being – (and I know I’m not saying anything different than the other posts) let people surround you with love and support. It will help you – and them, too.
TerriJune 1, 2009 at 12:07 pm #29167roma35Member
I just have to say I was a caretaker for my father who was diagonosed with this brutal cancer in stage 4. Being there for him, and listening, supporting, encouraging, hugging, driving, sitting through chemo, endless pet, cat, ultrasounds, and so much more, was the abosolute LEAST I could have done for him. I would have done anything to take away this cancer, or at the very least, ease his suffering. Please let friends and family help. It is just as important to us as it is to you. It is not a burdon, but an absolute labor of love. You patients, everyone of you, are my heros, I put you all in my heart where I keep my dad.June 1, 2009 at 2:27 am #29176jamie-dMember
I think Lainy put it perfectly. I know what you mean about being the one that usually takes care of others. I was a Registered Nurse for years and then took care of my Mother after my Dad passed. Taking care of others is what I do and want to do. I feel guilty having to have others help me…But… beating this awful cancer is more important so I feel we need to accept help when needed so we have the strength we need to fight this. God Bless,
JamieMay 31, 2009 at 7:40 pm #29175lainyParticipant
Paula, that is good. Every family has one person with the broadest shoulders but this is one disease that needs many shoulders. Its going to be a long journey and you need your strength and the help of others, if for nothing else to share what you are going through and then somehow the burden is lifted just a little. Sometimes it helps just talking something out and then boom, there is the answer. You are not admitting that you cannot handle it, rather you are saying this is the story and I need you to understand what is happening and also that there may be days I want to talk and there may be days I just don’t want to. Let them know that a lot of understanding is what you are seeking now. Good luck.May 31, 2009 at 7:19 pm #29174prpMember
I want to express my thanks and gratitude for the messages you all have given to me. You have given me a lot of food for thought and I think you are right that I should share the details with friends and family.
I have always been the one to take care of others so it is hard to admit that maybe I really do need the support of family and friends. Also, it is probably unfair to my loved ones not to tell the story and to give them the opprotunity to find out more about this cancer that most people have never heard about.
Once again, thank you so much.
PaulaMay 31, 2009 at 1:06 pm #29173gavinModerator
I just wanted to join with the others and welcome you to the site, although I am sorry that you have to be here. This site is excellent and the people here are amazing and will give you so much help and support. My dad was diagnosed last summer and everyone here has been so good to me through these tough times.
I guess there is no right or wrong answer as to how each person should deal with all of this. However, I do agree with the others and feel that talking about it and opening up to others will not only help you in this fight, but also those around you. I know that when my dad was diagnosed, I wanted to find out as much about this as I could. It sure is overwhelming at times having to deal with all of this so I believe it will help to have people to turn to, or even yell at if need be! My mum likes yelling at me so I guess that works for her!
As far as waiting mode goes, everyone here has been and goes through all of that. Waiting, for treatment, scans, results and to see doctors. Yeah that gets to be a bit of a drag, but when you come here and talk to others, at least they know what you are going through so it helps knowing that you are not alone in that feeling.
My best wishes to you and your husband.
GavinMay 31, 2009 at 4:47 am #29172daniellemargParticipant
Hello and welcome to the site. We all care a lot about each other. As you’ll the people on this site like to know as much info as possible and live far beyond the prognosis. I think it’s a good idea to share with people your struggle. People want to help and I agree with Lisa that now is when you really see who are your real friends and who are the fair weather friends… If I could offer advice it would be to let people help you. It will warm your heart and people genuinely want to help as they can’t make you better but they can make you feel better. It’s really win win.
Strength to you.May 31, 2009 at 1:40 am #29171marionsModerator
PRP….I would like to follow Tess, Lainy, and Lisa in welcoming you to our site. There are many success stories on this site and there is no reason for you not to be one yourself.
Hugs coming your way,
MarionMay 30, 2009 at 11:59 pm #29170tessMember
Hi PRP, just wanted to welcome you to the board, along with Lainy and Lisa. You’ve certainly had a tough couple of months, if you’ve been enduring chemo and radiation. And even with all of that, the ‘waiting’ for more answers may in-fact be the most difficult part of it all! There is no right or wrong way to share your story of cc with others, and its totally up to you when you want to do it. As the gals have indicated, this site is full of very wonderful people and no question or issue is too big or too small to share.
Wishing you strength, you’re in our thoughts….
TessMay 30, 2009 at 10:43 pm #29169lainyParticipant
Hello PRP and welcome to the best little club in the world that no one wishes to join! My husband was diagnosed August of 05 and after a Whipple surgery and at the age of 76 now, he is doing well. It did return last April but with cyber knife we have now got the monster out again. There is always hope and one must have hope and attitude to get through this nightmare. We had no choice but to let people know at the onset as it happened on vacation out of town while visiting our kids. My own personal thought is that one has nothing to gain by keeping secrets. You would be surprised at the support that will come to you and you will be thankful for that support. I also believe when you let it out and talk about it a lot it helps you cope with what you are going through. I started group emails to friends and family keeping them advised of what was going on. Just sending out those pots daily for a while helped me let my stress out. Some even read up on it themselves. Like Lisa, Teddy is looking good and its hard for people to understand that he has Cancer. By the way, nice post, Lisa. This is a wonderful site full of caring, thoughtful, and brilliant people who have 2 thoughts and that is to find a cure and to help each other. We just find the more you talk the better it is. The day will come when you don’t have to talk about it so much but in the beginning it sure helps. Please keep us posted on your progress and feel free to come here to ask, vent or advise.May 30, 2009 at 10:11 pm #29168lisaParticipant
Hi and welcome to our board.
I am about the same age as you, was diagnosed 21 months ago and given 3-6 weeks to live.
I also had radiation (my sympathies to you!) and chemo. It is very, very difficult to explain to others what you are going through when you “look” healthy but you know deep inside that you are very ill. At first I wanted to lose my hair so I would at least look like a cancer warrior!
I chose to tell my family, friends and co-workers about my illness and diagnosis. They have all been wonderful and supportive, and I know that I needed their support. I only recently retired from work last month, and was grateful that I was able to work so long because it really helped to have my old normal back (at least at work), and helped keep my mind off cancer.
My cancer has indeed spread to the lungs, and the IVC. Yet I sincerely feel that the chemo and radiation significantly slowed its prgression.
One thing we do know about this cancer is that it treats everyone differently. Chemo may work in your case, or it may not. I believe it is worth trying.
Now that I have a new “normal” of cancer in my life, I have found that we all adjust to it. I’m a single parent, and my kids have adjusted and been a great help to me. My parents have as well. In my case, not telling would have made me feel lonely and very isolated. This way, I know the love and support of those who care. The funny thing is that you really find out who your friends are. Some people dropped me like a hot potato. Then others, and even new friends, stepped in and have been fantastic to me and my family.
God bless you in your struggle.
LisaMay 30, 2009 at 8:26 pm #2359prpMember
I was diagnosed with Cholagiocarinoma in February. The tumor was found by accident while having a CT scan for bronchitis. It has been overwhelming at times as I look and feel healthy and it is hard to explain to people what is happening.
I have just completed 30 radiation treatments while doing chemo and now I am in the waiting mode for 4 weeks until I have more test to determine if the cancer has spread and what if anything the doctors can do for me.
I have been off work since April while dealing with the fatigue from treatments so I do feel isolated from my co-workers. My husband and I decided not to tell family and friends all of the worst case prognosis until we find out what if anything can be done to cure me or at least prolong my life.
How has others dealt with this when newly diagnosed?
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