CancerCompass message board discussion started by Trying to Understand on 1/25/2006 http://www.cancercompass.com/message-board/message/all,4245,0.htm Thu, 21 Aug 2008 00:00:00 GMT Thu, 21 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Trying to deal with the death of my youngest child has been devestating. Carcenoma of an unknown primary is one of the most frustrating and deadly cancers out there. I find it frustrating there are no "fund raisers" out there for that paricular cancer and would love to try and do something along those lines in my Daughters to be donated to the above cancer. Trying to Understand Wed, 25 Jan 2006 00:00:00 GMT My name is Vinnie and I am very sorry to hear about your daughter's death. If I can do anything or be of support, please feel free to say so. God Bless, Vinnie Daddy's Girl Thu, 26 Jan 2006 00:00:00 GMT I am so sorry about the death of your daughter. I lost my son when he was 17 in a car accident. He didn't die from an illness, but that doesn't matter. No one understands the loss of a child unless you have been there. Mine was 26 yrs ago, but I still think about him. Not everyday like the first few years, but often enough. I would have dreams of him and wake up hysterically crying. Then one night I had the most conforting dream of him and woke up feeling the warmth of his arms around me and I knew he was okay. I know the pain you are going through and nothing or no one can ease that pain. It just comes with time, time, and more time. Keep yourself busy, remember the wonderful times with her. It is never fair when it comes to a child. That is not the way life is supposed to be. Our children are supposed to bury us. Why, Why, Why?? How can the world continue when my child is gone. That is what went through my mind every morning when I woke up and heard the birds singing, the school bus coming, and the laughter of the children. If you need to chat, please email me whenever you want. Barbara119 Barbara 119 Mon, 30 Jan 2006 00:00:00 GMT Thank you for answering me...I feel as if I didn't make my point when I first created my message. The hurt and frustration is incredible and the visions of caring for her for so long just tear me apart..the loss of a chld like you said is just wrong...she was a police officer in a small town and worked with troubled kids..coached soccer and other sports for two different high schools...perfect health..had always taken care of herself as she played soccer from the time she was 6...how does someone so young and so healthy get a terminal cancer that is known to strike people in their 60-70 age....no one could figure it out..not the doctors....I thank you for listening...I am sorry about the loss of your son..I don't know what would be worse...a sudden devastion or a long painful one....either way, its the worst experience anyone could have to go through....Lynda Trying to Understand Tue, 31 Jan 2006 00:00:00 GMT In my culture they say that losing one's child is the worse pain, losing the earth below your feet and the sky above your head. I haven't lost a child, I don't even have one, but I know how the pain is of losing someone due to an unexpected cause, an unfair one.. You have to hold on..she's out there watching all your of your family and takes care of you. She would like to see you smiling and be happy, remember her with good memories and not tears, be the person she loved and admired. The pain never goes away, but it goes to sleep slowly slowly. Dream of her and she'll be there hugging you. You have all our support. Be strong. Elpida Wed, 01 Feb 2006 00:00:00 GMT First let me say I am sadened to hear of your loss. I to have lost a young (24) daughter. I know that each day is a constant battle to just breath. Just take each day moment by moment. I am finding a little bit of healing now. I've decided that one of the things that my daughter loved (smiley faces) was going to be a sign that she says Hey Mom and I love you! everytime I see one. So all along the day I look for them . And amazing they are all around. So if you can take something so simple and make it apply to you daughter it may help just a little. May God bless you with many memories throughout you days. Take care and cherish your memories. Dana (Jen's Mom) jennifergriffin.net Faith Thu, 15 Jun 2006 00:00:00 GMT Dear Dana, Thank you for writing me with your encouraging words. I am also sorry for your loss. It helps to know that we're not alone, I guess. How long has it been since Jen has passed and how did you lose her? You don't have to answer. My daughter, Amanda's birthday is tomorrow, so its been a rough week...I am working through alot of things, but the pain just sometimes seems so unbearable...I am sure you can understand. Thank you again for writing. Take care and may God keep you strong. Lynda..Amanda's mom Trying to Understand Fri, 16 Jun 2006 00:00:00 GMT Lynda, Thank you for your response. My daughter Jennifer passed away 15 months ago of colon cancer at 24 year old. She was my only daughter. As we walk this same road I'm sure our feelings are much the same. Just wanting to have the little things back, a touch, a smile, I love you one more time. We just have to try to keep living with the beautiful memories they left us with. I also am raising her little boy so that help in some ways. But painful in other ways. Just doing the best I can. I hope your days are filled with sweet memories of Amanda and just remember the love we shared with our girls will forever be in our hearts. Take care and may Gods arms be wraped around you. You may read Jen's story at jennifergriffin.net Dana Faith Mon, 26 Jun 2006 00:00:00 GMT I was diagnosed with stage 4 colon cancer in 2001. I have had conventional treatments during this time and presently have no indication of this affliction-- after pet scan and colonscopy.(9/06) I believe that blood stem cells have likely been a positive aspect of my survival and comfort. If you are interested, please foreward brief interest and attitude towards this subject. cancerstage4healedgp Gerald Fri, 08 Sep 2006 00:00:00 GMT hi lynda. i never logged on to any sites like this one before. When i read your msg about your daughter it touched a chord. your original question was whether anyone knew about fundraising for unknown primary cancers. although you live in the USA and i live in Ireland, you are the first person i have ensountered who thinks that in this day and age we should surly be able to learn more about unknown primary. i want to do everything i can. your daughter and my father should not have died, and especially not because of an inexplicable reason. i am not looking for sympathy here but i want you to know how much i want to do sommething about this unknown primary cancer. My father and i used to ring eachother every moring. although i lived approx 150km away i travelled home most weekends to see my dad and my mother. anyway the day i arrived home from my honeymoon, we were told that my father had cncer, but they didnt know where. fourteen months later he died, twelve hours after i had my first daughter ie his first grandchild. i know that you know what those fourteen months were like, only someone who has experirnce of this unknown primary can know the frustration and helplessness involved. i adorded my father and was his only daughter and i am devesated but do not want to sit aroundand do nothing about it. my daughter was born on the 22 aug at 3.15pm and my father died on the 23 aug at 3.15 am! now that i have a daughter i can empathise with you, if there is anything i can do to help raise money or awareness on this side of the world please let me know. sinead Crotty Mon, 04 Dec 2006 00:00:00 GMT Hi Sinead, I hope that I caught that right as your name. I was so touched to receive your response and I am so sorry of the horrible loss that you and your family have had to go through. Being the only daughter has had to be so difficult, and the birth of your baby so close to the end of her grandpa's life on earth has to be something unbearable. I don't know how old your dad was, I guess I am curious because we were told that this cancer was very rare in a female Amanda's age, usually elderly people are hit with it...70's 80's...When I received your e-mail, I actually got chills and a sense of excitement came over me for more than one reason. Our family is partly Irish and are very proud of it...Amanda's dream was to one day go to Ireland..she and her best friend had planned on doing it this year, I believe...she had all kinds of Ireland things displayed in her room and an Irish flag on her bedroom wall...it gave me goose bumps when I found out where you were writing from...and you have been the only one to respond to me in the way you did..there is no way to describe the frustration, anguish and pain that an entire family goes through with this cancer. Don't get me wrong, none of them are any good, but to know there are no answers, no resources to check into to raise money for awareness of this cancer is as frustrating as the disease itself. I had three children and I lost my youngest to a cancer that isn't often found in young people, from what I've been told..and you lost your father...I have no idea where to begin to find out any information on this...I've searched certain websites and basicly come up with nothing but how long it takes for it to take over your body and nothing about wanting to set up away to fight it....is it because the word terminal, but hopeful is the first thing you are told so they go no further with any testing...they could have used Amanda, she had a young, healthy body, she was in the army national guard, became a cop and played soccer from the age of 6..she never smoked always took good care of herself because she was so athletic..she coached soccer at the school she graduated from as well as the one in the city that she worked as a cop...well, I'm getting off track, sorry...its just that where do they do research on carcinoma of an unknown primary? I'll bet they would love some donations if we could find them...Amanda was ready to fight this and she was ready to do anything she could to save her own life and help others that will be stricken with it...Hopefully between the two worlds we live in, we can come up with some answers..I hope I didn't go onto much, because I've really not changed anything for either of us...whats your baby's name? And where in Ireland do you live...I work with a woman thats made two or three trips there and the next time she goes she is going to take Amanda's badge from her police uniform and put it up on a pub wall wherever it is they go...I hope to hear from you again..and I hope that your family is holding onto the precious memories of your father...I was told to rejoice and be glad for the time we had Amanda with us and try not to think about how it all changed at the "end"..I don't know if you find this, but it is hard to do, even after just a year....I wish you all peace in your hearts...Lynda Trying to Understand Wed, 06 Dec 2006 00:00:00 GMT hi lynda thank you for replying. i find it very difficult to talk to my mother about my dads death because i am trying to be strong for her so i dont like to get upset in front of her or even talk about dad to her, so its really good to be able to talk to someone. your daughter Amanda sounds great. it is such a coincidence, my husband is in the police force in ireland or as we like to call them "an garda siochana". it is such a shame that amanda never got to come here but hopefully we will get some recognition of this cancer going somehow and we will get her badge over here and have a drink to her! Your daughter and dad cannot just be forgotten. i would hate that any other person would havet to experience this frustrating cancer. There is no pattern to this cancer though. Dad was only sixty when he got it or i should say when he was diagnosed. i dont know how llong he had it for before that. My father never smoked or drank any alcohol, believe it or not for an irish man! but he was fantastic, he was very fit, ran up a mountain once a month for fun. so it doesnt seem to matter about health or fitness when talking about this cancer. i named my daughter kate Frances, after dad who was Tom Francis. I am still in the denial stage that i will never see him again and still cannot visit his grave, but i knw that i would feel better if i could do something to raise awareness. We will have to get our thining caps on! for th emoment though i am very glad to be able to talk to somene and i hope that i am not bringing back very sad memories of amandas death for you. i live in the sunny south east of ireland in Tipperary. i hope that we talk again. i really hate the fct that any other family had to go through the frustration that we went through but i am glad to be talking to you. take care sinead Crotty Thu, 07 Dec 2006 00:00:00 GMT Hi Sinead...they have changed this since I have last written...I'm sorry its been so long...I hope you didn't  think I just didn't want to write  I have not been able to find your last e-mail to me on this web page...I have no problem with you writing me, It helps me as well to get through all of this...I won't make this long...perhaps, I should just send you my e-mail address instead of trying to communicate thru this site...I know they are doing a great job helping people....but let me know what you think about exchanging e-mails...I hope this finds you all doing ok.....this time of year is so hard..now that I have hopefully gotten back in touch with you, I hope to hear from you soon....please take care..my thoughts are with you and your family as well as my prayers....Lynda Trying to Understand Thu, 21 Dec 2006 00:00:00 GMT  On 12/4/2006 Crotty wrote:hi lynda. i never logged on to any sites like this one before. When i read your msg about your daughter it touched a chord. your original question was whether anyone knew about fundraising for unknown primary cancers. although you live in the USA and i live in Ireland, you are the first person i have ensountered who thinks that in this day and age we should surly be able to learn more about unknown primary. i want to do everything i can. your daughter and my father should not have died, and especially not because of an inexplicable reason. i am not looking for sympathy here but i want you to know how much i want to do sommething about this unknown primary cancer. My father and i used to ring eachother every moring. although i lived approx 150km away i travelled home most weekends to see my dad and my mother. anyway the day i arrived home from my honeymoon, we were told that my father had cncer, but they didnt know where. fourteen months later he died, twelve hours after i had my first daughter ie his first grandchild. i know that you know what those fourteen months were like, only someone who has experirnce of this unknown primary can know the frustration and helplessness involved. i adorded my father and was his only daughter and i am devesated but do not want to sit aroundand do nothing about it. my daughter was born on the 22 aug at 3.15pm and my father died on the 23 aug at 3.15 am! now that i have a daughter i can empathise with you, if there is anything i can do to help raise money or awareness on this side of the world please let me know. sineadHi Sinead,I have tried to answer the second e-mail you sent me, this is like the third time....I can't even find it now.....please let me know if you get this, I hate to lose contact with you....I hope you are doing ok...I have no problem with your writing me...its therapeutic in some ways, as you said, if you haven't been through that awful nightmare, its hard to understand...I hope you and your family are getting through as best you can....its a long road and a long"tunnel" of struggle for sure....maybe we could exchange e-mail addresses...hope to hear from you soon..my thoughts and prayers are with you...Lynda Trying to Understand Wed, 27 Dec 2006 00:00:00 GMT Hi Sinead.....Just thought I would try to get a hold of you one more time...I hope this finds you and your family holding onto each other and that you are all doing well....hope to hear from you again...Lynda Trying to Understand Mon, 22 Jan 2007 00:00:00 GMT Hi Sinead....its Lynda....just trying to get back in touch with you...if you get this, please contact me and let me know how you and your family and new little girl are doing....hope to hear from you soon...Lynda Trying to Understand Mon, 22 Jan 2007 00:00:00 GMT